Prematurity
in Ireland
An insight into the social, economic
and psychological encumbrance on
families in Ireland 2014
01
TABLE OF CONTENTS
PART ONE
P. 05Overview
P. 05 Objective of the report
P. 05 Format of the report
P. 05 Data collection
P. 06 What is prematurity
P. 06 Preterm birth rates in Ireland
P. 06 Low birth rates in Ireland
P. 08 Global & European preterm birth rates
P. 09 Effects of prematurity on the child
P. 09 Long term effects of prematurity on the child
P. 10 Financial burden on parents of preterm babies
P. 11 Financial burden on parents after the discharge
PART TWO
P. 15 Section A - Questions Asked In Parent Information & Experience
P. 15 General information:
1)
What complications (If any) did you have during your pregnancy?
2)
Reasons for your preterm delivery?
3)
Previous preterm deliveries (if any)
4)If you knew you were going to deliver early, adequately prepared prior to the birth by
the hospital staff, how would you rate the level of communication from the hospital
personnel during their hospital stay?
5)How would you rate your access to professional services in the hospital social
workers, lactation consultant, and hospital psychologist?
6)
How would you rate infection control methods i.e. hand washing etc.?
7)Please comment on the level of support offered to you while in the unit i.e. in the
form of group discussions, parent to parent support, hospital initiated support
networks?
8)
Was there a parent room and rooming in facilities before baby is discharged home?
9)Do you think a community neonatal nurse to aid the transition from NICU to home
would have made their experience easier? (Rate 0 to 5)
P. 19
Post -Traumatic Stress Disorder/ Post Natal Depression:
1)
Did you suffer from Post Natal Depression or Post Traumatic Stress Disorder?
2)
Did you find that your attending doctor was sufficiently informed about pre term
birth to diagnose PND and PTSD?
P. 20
Communication in the Neonatal Units:
1)
Did you have sufficient literature to inform family and friends about RSV and the
restrictions on visitation, when baby was discharged from the unit?
2)
While in the hospital did you get any information about prematurity?
3)
While in hospital did you get any information about Irish Premature Babies?
4)Did the unit you attended had a discharge nurse and to rate the quality of the
information relayed to them upon discharge. (scale 0-5)
5)
How would you rate your involvement in decision making process?
6)
How would you rate the communication from various medical staff?
P. 21
End of life:
1.
Did you have access to privacy near the end of life?
2.
How did you find staff dealt with the handling of the death and arrangements?
3.
Did you have access to counselling support within and beyond the unit?
02
P. 22 Section B - Patient Experiences In Maternity Units
1)
Year of birth
2)
City of Birth: Not included in this report
3)
Hospital of Birth: Not included in this report
4)
Transferred hospital (If applicable): Not included in this report
5)
Length of time in transferred hospital (If applicable) Not included in this report
6)
Birth weight when born?
7)
Gestational age (weeks)when born ?
8)
Sex of baby?
9)
Health problems that your baby had in the unit?
10)
Was your baby readmitted to hospital at any stage?
11)
Method of feeding baby upon discharge ?
P. 27 Section C - Questions Asked In Post Discharge And Community Care
P. 27
Post discharge and Public Health Nurse
1)
Length of time attached to hospital aftercare?
2)
Did you know your rights & entitlements?
3)
Did your Public Health Nurse make first contact?
4)
How soon was it after your baby’s discharge?
5)
How many times did you see your Nurse?
P. 28
Community Care
1)
How did you find the support in the community?
2)
Could you expand on your selection?
3)
What follow up therapies did your child attend?
4)
Any other therapies:
5)
What length of time did your child attend?
6)
Did you avail of these therapies private/public?
7)
Assess your child’s access to therapies?
8)
Could you expand on your selection please?
9)
Did your child require a Special needs assistant?
10)
Did your child complete State examinations?
PART THREE
P. 31 Case Study 1 - Sophie
P. 33 Case Study 2 - Michael & Gabrielle Dodog
P. 35 Cast Study 3 - Ornagh 33 Weeks And Cara At 29 Weeks
PART FOURS
P. 39 The Current Role Of Irish Premature Babies
P. 40 Our Recommendations
P. 42
References
PART
one
05
OVERVIEW
The national report on prematurity “Preterm birth: An insight into the social, economic and psychological
encumbrance on families in Ireland 2014” is part one of a longitudinal study into the long term effects of
prematurity on both the baby and the family of the preterm baby. There will be three stages in this study,
beginning when the neonate is born up right up to eighteen years of age until they reach adulthood. This
report will give a unique perspective into both the short and long term experiences of parents. The report will
also highlight the epidemiology associated with preterm birth.
OBJECTIVE OF THIS REPORT
The principal aim of this report is to give a voice to the families of preterm babies born in Ireland each year.
This report looks at the experience of 600 families throughout the country and details their unique and
distinctive experience of having a preterm baby in Ireland. In doing so the report aims to:
• Highlight some of the key reasons for preterm birth in Ireland.
•Highlight the problems faced by parents while their baby is admitted into one of Ireland’s Neonatal
Intensive Care Units or Special Care Baby Units.
• Voice the experience of bereaved parents and present their experience of how neonatal death is dealt with in hospitals.
•Report on the outcomes of prematurity on the baby and highlight some of the long term issues faced by preterm babies.
• Report on the effects of having a preterm baby on the family unit.
• Highlight the problems and difficulties faced by parents in seeking follow up care in the community.
• Help to stimulate a wider interest in research in the area of prematurity.
• Promote a general understanding of prematurity from a parent’s perspective.
•Highlight the importance of adequate funding and training for the Neonatal Intensive Care Units and
Special Care Baby Units.
FORMAT OF THIS REPORT
Part one provides a brief synopsis and understanding of the terminology and statistics associated with
preterm birth from an Irish perspective.
Part two looks at the questions asked in the survey and provides the results of the answers given by parents.
Part three offers three case studies from parents who were involved in this survey. It delivers a human
element to a statistical report.
Part four offers a conclusion and recommendations by the charity.
DATA COLLECTION
In 2011 the charity set up a section on their website www.irishprematurebabies.com called “Register your
Prem”. At the date of publication of this report, over 600 parents have filled in the section. We have been
acquiring the results for just over three years. Survey participants were asked to fill in a total of 47 questions.
The survey is divided into three main sections:
Section A focuses on parent information and experience while the baby is in the NICU/SCBU
Section B deals with patient information of the baby while in the unit.
Section C outlines patient follow up after discharge.
06
In order to protect the anonymity of both the parents and the baby, personal details have been omitted from
this report. We have also omitted naming specific hospitals in the report as it would not benefit either the
hospital or current/future admissions.
What is prematurity?
Premature birth is defined by the World Health Organisation (WHO) as a birth that occurs at less than 37
weeks gestation. The WHO breaks down the definition of prematurity into three classifications (1)
• Extremely preterm: less than 28 weeks
• Very preterm: 28 to 32 weeks
• Moderate to late preterm 32 to 37 weeks
Preterm birth rate in Ireland
In Ireland statistics on births and prematurity are collected by the Central Statistics Office (CSO) and by the
ESRI through the National Perinatal Reporting System (NPRS) which is part of the Health Research and
Information Division (HRID) at the Economic and Social Research Institute (ESRI). The NPRS publish an
annual report on all births nationally. The latest report published in November 2013 is for 2012 and this
gives the following information relating to premature births in Ireland. (2)
Gestation preterm birth rate:
Singleton Births:
Less than 28 weeks gestation Between 28-31 weeks gestation
Between 32-36 weeks gestation
226
354
2,542
Multiple Births:
Less than 28 weeks gestation
Between 28-31 weeks gestation
Between 32-36 weeks gestation
67
169
1,098
Total number of preterm births was 4456
There were 71,986 births in total for 2012


6.2% of all births were preterm (less than 37 weeks gestation)
1 in every 16 births are preterm.
Low Birth-Weight Rate in Ireland
Low birth weight is an important predictor of new-born health and survival and is associated with higher risk
of infant and childhood mortality.(3)
• Low birth weight babies are defined as weighing less than 2,500 grams.
• Very low birth weight, weighing less than 1,500 grams.
• Extremely low birth weight, weighing less than 1,000 grams.
07
Singleton Low Birth Rate:
Between 500-749g113
Between
750-999g128
Between
1000-1249g148
Between
1250-1499g146
Between
1500-1999g523
Between
2000-2499g1,716
Singleton Low Birth Rate:
Between
500-749g37
Between
750-999g42
Between
1000-1249g54
Between
1250-1499g87
Between
1500-1999g325
Between
2000-2499g727


3.85 % of singleton live births were low birth weight (less than 2,500 grams)
1.77% of multiple live births were low birth weight (less than 2,500 grams)
Global perspective on preterm births
According to the latest WHO report,”Born too soon the global action on preterm birth”, 15 million babies are
born prematurely every year. The WHO report was the first ever, national, regional and global evaluation of
preterm birth. It highlighted how preterm birth rates are increasing in many countries and that preterm birth is
now the second leading cause of death worldwide for children under the age of five. Pneumonia is the primary
cause of death (4) 1.1 million preterm babies will die each year and countless others suffer some type of
lifelong physical, neurological, or educational disability, often at great cost to families and society. World
health leaders reported that preterm births have been an overlooked and neglected problem worldwide. “All
new-borns are vulnerable, but preterm babies are acutely so,” says UN Secretary General Ban Ki-moon.
1 in 10 babies
worldwide are
born too soon.
08
Worldwide & European comparison of
estimated preterm birth rates - Source WHO
DEATHS DUE TO PRETERM
PRETERM BIRTHS (source Blencowe H et al)
Country name
BIRTH (source Li Liu et al)
Live births
Preterm
birth
Rank for
Number of
Rank for
Estimated
Annual
Deaths from
Rank for deaths
-2010
rate
preterm
birth
rate
preterm
births
number of
preterm
births
(2010)
% change in
preterm birth
rates (1990 2010)
complications
of preterm
birth (2010)
due to
complications
of preterm birth
(2010)
-2010
-2010
-2010
Australia
302,900
7,6
139
23 200
80
1,6
300
106
Austria
74,200
10,9
77
8 100
109
2,3
100
143
Belgium
122,500
7,9
131
9 700
103
2,5
100
135
Bulgaria
75,600
7,5
144
5 600
123
0,9
200
115
1,0
600
94
57 200
4
Canada
383,100
7,8
135
29 800
72
China
16,600,000
7,1
154
1 172 300
2
Croatia
42,800
5,5
180
2 400
147
-1,1
<50
153
Cyprus
12,900
14,7
13
1 900
152
2,8
<50
174
Czech Republic
115,000
7,3
150
8 400
108
1,3
100
137
Denmark
63,800
6,7
159
4 300
138
0,8
100
138
Finland
60,600
5,5
179
3 400
143
0,5
<50
155
France
792,600
6,7
158
53 100
49
1,6
400
97
Germany
694,900
9,2
106
64 200
43
1,2
800
84
Greece
117,600
6,6
162
7 800
110
1,9
200
119
Hungary
99,300
8,6
119
8 500
107
0,5
200
116
Iceland
4,700
6,5
167
300
172
<50
181
India
27,200,000
13,0
36
3 519 100
1
303 600
1
Ireland
72,200
6,4
170
4 600
135
2,1
<50
152
Italy
558,500
6,5
166
36 300
65
0,6
500
96
1,9
300
108
<50
176
Japan
1,077,100
5,9
175
63 500
44
Malta
3,800
6,4
168
200
176
Netherlands
182,600
8,0
127
14 600
94
0,8
200
122
New Zealand
64,200
7,6
141
4 900
132
2,1
100
142
Norway
60,500
6,0
172
3 600
141
0,7
<50
157
Philippines
2,344,200
14,9
12
348 900
8
12 400
14
Poland
405,100
6,7
157
27 200
73
0,0
700
87
Portugal
98,600
7,7
138
7 600
111
1,9
100
139
Romania
220,600
7,3
151
16 100
89
0,8
800
85
Russian Federation
1,681,600
7,0
155
117 800
25
0,8
3 800
47
Serbia
111,100
6,7
161
7 400
112
0,4
300
114
Singapore
45,400
11,5
67
5 200
126
<50
160
South Africa
1,059,000
8,0
128
84 800
34
7 800
28
Spain
498,300
7,4
145
37 100
63
2,2
400
98
Switzerland
76,100
7,4
146
5 700
122
1,3
100
136
Turkey
1,298,300
12,0
56
155 400
19
5 200
42
United Kingdom
756,600
7,8
134
59 300
46
1,5
1 300
74
United States of America
4,300,600
12,0
54
517 400
6
0,7
5 800
37
09
Effects of prematurity on the CHILD
Preterm babies are often born unable to orally feed, breathe without support, or thermo-regulate. As a result
of being born prematurely, major organs will not have had enough time to fully develop in utero, leading to
several premature specific health effects. Although any preterm infant can be born with health risks, infants
born prior to 32 weeks are most likely to have severe health risks.
Possible health complications include the following:
• Respiratory Distress Syndrome (RDS)
• Intraventricular Hemorrhage in the brain (IVH)
•Hyperbilirubinemia
• Retinopathy of Prematurity (ROP)
• Bronchopulmonary Dysplasia/ Chronic lung disease (BPD)
• Anaemia of Prematurity
• Neonatal Sepsis and other infections
• Heart conditions
•Hypoglycemia
• Necrotizing enterocolitis
• Hearing deficit.
• Delayed growth and development.
Long term effects of prematurity on the
child
Preterm babies who survive the first year will have decreased mortality rates in contrast to babies who are
born at term. Recent research (5) has shown that prematurity is an important factor in neonatal mortality
and can possibly have much longer-term consequences, in terms of the health of children born early. Babies
born prematurely have higher rates of cerebral palsy, sensory deficits, learning disabilities and respiratory
illnesses compared with children born at term. Low birth weight is seen as an indicator for potential health
issues throughout life and can have consequences for all of the baby’s life.
Research by Swamy et al (2008) (5) has shown that preterm children who progress into adolescence will
continue to exhibit after-effects from their preterm birth. The research also found that sixty percent of babies
born at 26 weeks gestation have long-term disabilities such as chronic lung disease, deafness, blindness and
neurodevelopment problems. Infants born at 31 weeks were found to be 30 percent less susceptible to these
conditions. Infants born only a few weeks early (late preterm, 34-36 weeks) often have long-term difficulties
such as:
• Behavioral and social-emotional problems
• Learning difficulties
• Increased risk of conditions such as Attention Deficit-Hyperactivity Disorder (ADHD)
• Increased risk for Sudden Infant Death Syndrome (SIDS)
10
• Children born preterm are more likely to require early intervention and special education services.
•Children born preterm are more likely as adults to have chronic diseases such as heart disease,
hypertension and diabetes (6)
Financial burden on parents of preterm
babies
There can be a huge financial strain on families to meet the associated costs that result when having a
preterm baby in Ireland.
•Travel costs while the neonate is in a unit. The daily commute to the NICU/SCBU will dramatically increase
costs for the family unit. According to research done in the US by Hodek et al, (7) transport costs can
account for up to 64% of the extra expenditure parents must pay. Some babies will need to remain in a unit
for a few weeks right up to several months. If a baby is transported outside the region of its birth this will
further exacerbate the cost. Over 2750 babies were transferred by the NNTP (National Neonatal Transport
Programme) to Primary Level One neonatal intensive care units since the programmes’ inception(8). In
some incidences, parents were compelled to travel up to 4 hours on a daily commute to the NICU. This is
an ongoing problem for many parents throughout Ireland.
•Parking costs while the neonate is in a unit. Many of the hospitals do not provide parking for parents. Daily
parking costs especially in the central business district of towns can cost parents from €6.00 up €12.00
per day in car parks. On street parking around hospitals like the National Maternity Hospital can cost as
much as €2.40 per hour.(9) The board of directors in the charity have seen receipts attached to Hardship
forms for up to €400 for parking fees.
•Childcare costs while the neonate is in a unit. If you have other children at home they will need to be
looked after while a parent/parents visits a unit. According to the National Consumer Agency, full time
care in a crèche can cost from €165 to €268 for one child per week depending on location (10) and costs
for part-time can vary from €132 to €193 per week.
•Accommodation costs while the neonate is in a unit. If a baby is transported to Dublin, for example, for
treatment, there is no accommodation for parents in any of three Dublin Maternity Hospitals. Parents
must then seek private accommodation for themselves for the duration of their babies stay in hospital.
B&B costs per night in Dublin City can vary from €59.00 per night (11).Hotel accommodation can cost
from €59 on special deals up to €190 per night. This situation is in direct contrast to the two children’s
hospitals in Dublin. In Crumlin Hospital, they have 2 houses across the road from the hospital and
also have the 2nd floor within the hospital. They have 54 rooms available and can take 71 parents
at max capacity. Crumlin hospital also has a Ronald McDonald House. They have 2 houses the main
house has 16 bedrooms and the second smaller house has 4 bedrooms. In Temple Street Children’s
hospital they have 15 rooms, 6 of which are double rooms. In the baby ward they have a bed in each
cubicle for 1 parent to stay and renal ward has pull-out beds. They also have a house given by Sherry
Fitzgerald. If parents are not given accommodation within the hospital they are given a list of local B
& B accommodation. The accommodation office stays in daily contact and tries to move them into the
hospital.
•Food and water costs while the neonate is in a unit. When a parent is away from the home each day for a
number of hours, there are normally associated costs with food and beverages. It is imperative, especially
for mothers who are expressing milk, that they eat a healthy diet and drink sufficient fluids. In a survey the
charity undertook called “Irish Premature Babies –Feeding Survey for premature and ill babies 2010” with
the help of Dr. Genève Becker, over 46% of mothers had no access to nutritious meals in the hospital and
12.8% had no access to drinking water (12)
•Breast pump rental. Mothers who are expressing must rent a hospital grade breast pump to ensure that
an adequate supply of breast milk for the baby. The current cost of a pump rental is €96.57 per month *
(Medicare Health & Living Ltd.)
11
Financial burden on parents of preterm
babies post discharge
Post discharge costs
•Loss of wages. Under the Maternity Acts of 1994 and 2004, a mother is entitled to 26 weeks maternity
leave and 16 weeks unpaid leave. For babies who are surviving from the earliest gestations 23/24/25/26
weeks, the baby can spend months in the neonatal unit and a mother can use up the majority of her
Maternity Leave. There are allowances in the Acts for a mother to defer her maternity leave while a baby
is hospitalised. But this does not take into account mothers who are ill or have undergone Caesarean
Sections. It does not take into account that a mother needs to be expressing milk up to eight times a day.
It is difficult to comprehend how a mother could return to normal work duties while her new-born baby
fights a daily battle to survive. Evidence has shown the babies benefit from the touch and closeness of the
mother on a daily basis. Babies who are discharged from a unit with a definite long term diagnosis or on
supportive medical equipment need full time care. There are allowances from the state to provide carer’s
leave, domiciliary care allowance, respite care grant and some tax credits and reliefs. If a parent has a
skilled professional job prior to the preterm birth, the allowances granted by the government do not come
close to the average industrial wage of €41,806.96 ( As provided by the Central Statistics Office)(13)
• M
edical costs. If a preterm baby is prescribed a synagis injection to protect the baby from the RSV virus,
the cost of this injection to non-medical card holders is €144.00 per month. Medical costs can continue
for months or years and not all parents are eligible for medical cards to cover the costs of medication for
their preterm baby/child.
•GP costs. A preterm baby can have long term health issues. They can also be more prone to infections due
to their immature immunity. Some parents who are not working will be entitled to a GP card or a Medical
card but a huge proportion of parents who try to continue working must pay full GP costs. GP costs can
vary from €50 to €80.00 per visit. Extremely low birth-weight children (birth weight 500-999 g) have
more hospital re-admissions and other health problems in the early years after discharge than do normal
birth-weight children (birth weight >2499 g) children. Respiratory illnesses, including lower respiratory
infections, are the dominant cause for hospital re-admission.[14]
•Private assessment and therapies. According to numerous research studies (15) cognitive and neuromotor
impairments at 5 years of age increase with decreasing gestational age. Many of these children need a
high level of specialised care. About half of infants born at 24-28 weeks of gestation have a disability at 5
years, similar to the proportion observed in the UK-based Epicure study. In the infants born later (29-32
weeks of gestation), about a third have a disability at 5 years. In Ireland, when the baby/toddler is still
attached to the NICU for developmental monitoring, they will have access to therapies within the hospital
when available. Therapies like speech and language and Occupational therapy are primarily provided in
the community, where there are long waiting lists. In many areas children must wait months/years for
assessments and for therapy depending on the location in Ireland. Figures of waiting lists were released
by the HSE in February 2013 :



34,617 are waiting for Speech and Language assessments and therapy
15,830 people are waiting for an initial Occupation Therapy assessment
21,620 people are waiting for physiotherapy assessment.
Many parents are seeking private assessments and private therapy in an effort to try intervene as early
as possible in the child’s development. Private assessment with reports can cost from €280 upwards for
speech and language and therapy for an hour can cost €60.00. (16) Private physiotherapy costs for initial
consult can be €65.00 and follow up appointments €50.00 (17) Occupational therapy can cost from €250
per assessment or €450 for a multi-disciplinary assessment, which is often required for preterm babies. The
majority of parents that the charity deals with do not have the funding for private therapy primarily because of
the costs outlined above. Some of the preterm babies with specific issues will require therapy over a number
of years and on the average industrial wage, this route of private therapy is unattainable.
Professional support for parents The majority of babies are discharged on the bottle from the NICU. In the
charity’s feeding survey, out of 280 mothers:
12
25 babies were full breastfeed.
39 babies had some feeds on the breast and the rest expressed milk in a bottle
51 babies were fully on expressed milk in bottles
24 babies were fed on a mixture of breastfeeding and formula
50 babies were fed a mixture of breastmilk and formula in bottles
91 babies were fed solely on formula.
If a mother would like to transition her baby to the breast at home, she will incur the costs of a private
lactation specialist. Costs for lactation specialists vary from €90 up to €150. It can be difficult for some
preterm babies to learn to breastfeed especially if bottle feeding was the first independent means of feeding.
It can take several visits by a lactation specialist to work with both the mother and the baby. The World Health
Organization and UNICEF recommendations on breastfeeding are as follows: initiation of breastfeeding within
the first hour after the birth (not applicable to most preterm babies), exclusive breastfeeding for the first six
months; and continued breastfeeding for two years or more, together with safe, nutritionally adequate, age
appropriate, responsive complementary feeding starting in the sixth month.
The early weeks and months are a sensitive period when mother and baby need to be together. Separation
of mothers and new-borns is a physical deprivation and an emotional trial. Mothers of premature babies
are at higher risk of Post Traumatic Stress Disorder. A study from the Stanford University School of Medicine
showed over half the parents whose babies were in the NICU for an extended period of time either had
Post Traumatic Stress Disorder (PTSD)(19) or were at high risk for developing it. A separate study carried
out by Duke University graded parents on three PTSD symptoms: hyperarousal, avoidance, and flashbacks
or nightmares. 30 parents were interviewed; 29 of them had two out of three of those symptoms, and 16
parents exhibited all of them(20). For a mother to get counselling for PTSD or PND, costs can vary from €55
to €120 per session(21)
Even several years after the birth, the effect can also be noted on other family members. Some children will
need a parent to become a full carer. This can have an affect on the relationship with other siblings and on
the family resources. There can be upheavel in the family home, altering of the family routine and this can
lead to instabilities, marital problems, emotional and behavioural concerns of other siblings, altered lifestyle
and isolation. (22)
1 in every 16
women will
deliver preterm
each year in
Ireland.
PART
TWO
15
Section A - Questions asked in Parent
Information & Experience Questionnaire
General information:
1) What complications (If any) did you have during your pregnancy?
2) Reasons for your preterm delivery?
3) Previous preterm deliveries (if any)
4)If you knew you were going to deliver early, adequately prepared prior to the birth by the hospital staff,
how would you rate the level of communication from the hospital personnel during their hospital
stay?
5)How would you rate your access to professional services in the hospital social workers, lactation
consultant, and hospital psychologist?
6) How would you rate infection control methods i.e. hand washing etc.?
7)Please comment on the level of support offered to you while in the unit i.e. in the form of group
discussions, parent to parent support, hospital initiated support networks?
8) Was there a parent room and rooming in facilities before baby is discharged home?
9)Do you think a community neonatal nurse to aid the transition from NICU to home would have made
their experience easier? (Rate 0 to 5)
Post -Traumatic Stress Disorder/ Post Natal Depression:
1) Did you suffer from Post Natal Depression or Post Traumatic Stress Disorder?
2) Did you find that your attending doctor was sufficiently informed about pre term birth to diagnose
PND and PTSD?
Communication in the Neonatal Units:
1) Did you have sufficient literature to inform family and friends about RSV and the restrictions on
visitation, when baby was discharged from the unit?
2) While in the hospital did you get any information about prematurity?
3) While in hospital did you get any information about Irish Premature Babies?
4)Did the unit you attended had a discharge nurse and to rate the quality of the information relayed to
them upon discharge. (scale 0-5)
5) How would you rate your involvement in decision making process?
6) How would you rate the communication from various medical staff?
End of life:
1. Did you have access to privacy near the end of life?
2. How did you find staff dealt with the handling of the death and arrangements?
3. Did you have access to counselling support within and beyond the unit?
SECTION A - Answers given in Parent Information & Experience.
Profile:
Of the 500-plus families surveyed, one-sixth had a multiple birth with the remainder single births. The
proportion of male and female babies was relevantly equal. For over a third of women, this was their first
child. Half had between one and three other children, while one-sixth had four children or more.
The earliest preterm baby was born at 24 weeks.
1. What complications, if any, did you have during your pregnancy?
The responses to this question showed a wide variation in pregnancy complications, with many women
reporting none at all, to a significant proportion who listed a number of problems they had experienced during
their pregnancy,
•A quarter of those surveyed said they had no complications whatsoever, with many commenting that it
had been a “perfect pregnancy”.
16
• Bleeding was a problem for about 20 per cent of women and this varied from light to extremely heavy.
Some had once-off incidents, of “spotting”, other had quite heavy bleeds. For some women, bleeding
throughout the pregnancy was an issue. Some mothers were reassured that the bleeding was nothing to do
with their pregnancy – others remained unexplained. For a small number, the bleeding was accompanied
by pain.
•Around four per cent of women reported having placenta praevia, while one per cent of women had a low
lying placenta. A handful of women experienced frequent urinary tract infections. A handful commented
that they had experienced lower back pain.
•About 8 per cent of those surveyed had pre-eclampsia while a small number then developed HELLP
syndrome – about three per cent of those surveyed. Five per cent of women had high blood pressure and
many mentioned that this had then turned into pre-eclampsia.
• About three per cent had developed gestational diabetes during their pregnancy.
• R
oughly four per cent of those surveyed confirmed issues with the growth of the foetus, with many citing
diagnosed intrauterine growth restriction (IUGR).
• A couple of the mothers surveyed had experienced pulmonary embolisms.
• Obstetric cholestasis was an issue for one per cent of women surveyed.
•Three per cent reported premature rupture of membranes (PROM) and a small number of mothers
reported cervical incompetence with one having a cervical stitch.
• Roughly one per cent had hyperemesis. A small number reported swelling in their face/feet.
• A
small number of mothers had pre-existing chronic medical conditions, including inflammatory disorders
such as Crohn’s disease and rheumatoid arthritis, as well as Type 1 diabetes.
2. Reason for your pre term delivery?
•In the majority of cases, the pregnancy complications were directly responsible for the preterm birth.
Around 10 per cent of women stated that they had gone into spontaneous premature labour, while 12
per cent reported an emergency Caesarean section. Six per cent stated that the reasons were still not
known.
•Some 15 per cent of women reported problems with the placenta as the reason for their preterm birth
– these included placenta praevia, placental abruption, placental haemorrhage, placental infection, and
reversal of placental blood flow.
• One per cent of women stated that the baby was either losing weight or not gaining any.
•Ten per cent stated pre eclampsia was the reason for the preterm birth while three per cent cited HELLP
syndrome as the reason.
•Twelve per cent stated that their waters broke early, either spontaneously or due to a stated pregnancy
complication.
• One per cent of women stated that the baby was either losing weight or not gaining any.
• One per cent said the baby was in distress.
•Two per cent highlighted a cervical issue e.g. a shortened cervix or incompetent cervix as the reason
given.
17
23.4% Unknown
22.6% Waters broke / ruptured membranes
19% High blood pressure / Pre-eclampsia / HELLP syndrome
6.6% Placental abruption
2.5% Placenta previa
4.1% IUGR
2.3% TTTS
3.3% Infection (not specified)
1% Weakened cervix
1% UTI / Kidney infection
1.2% Cholestasis
1.6% Reversed blood flow in placenta
11.2% Other causes
3. Previous preterm births if any?
15% of all mothers who answered had at least one previous preterm delivery.
4. If you knew you were going to deliver early, adequately prepared prior to the birth by the hospital staff,
how would you rate the level of communication from the hospital personnel during their hospital stay?
(Level 1-5, 0=none)
The responses to this illustrated a wide disparity in the quality of communication received by the mother
from hospital staff prior to their early delivery. While 29 per cent rated this 5, or excellent, a worrying 38
per cent gave a rating of 0, indicating they had not received any communication from staff at the maternity
unit. The paucity of adequate communication is notable. Positively speaking, where there was adequate
communication, this was rated very high by the expectant mother.
Four per cent rated this communication 1, or poor, while a further four per cent gave it a rating of 2. Eleven
per cent rated it 3, or average, while 11 per cent rated it 4, or very good.
0 – 38%
1 – 4%
2 – 4%
3 – 11%
4 – 11%
5 – 29%
5. How would you rate your access to professional services in the hospital - social workers, lactation
consultant, and hospital psychologist?
This question allowed for mothers to rate hospital services from 0 -5 and to explain in more detail the various
services they received. The data was difficult to analyse statistically, however, it yielded a wealth of information
on the views of parents on the services available to families in NICU in Ireland over the past five years.
42% of respondents rated the services they received while in hospital as “excellent” or “very good” whereas
33 % rated the service as 0-2 or “very poor” or “none”. Some respondents rated the service numerically or as
“Excellent”, “Very Good”, “Poor”, “Non-existent”. Many responded to give detailed information on the services
they experienced while in NICU with their preterm baby.


42% access to allied professional services as excellent or very good
33% access to allied professional services as very poor or no services at all.
Lactation Consultant Service was the service that received the majority of the comments, followed by
Psychologist and finally Social Worker.
•“I was visited by the LC and she explained to me about the usage of the breast pump and the
importance of expressing breast milk”
•
“LC was available all the time to answer questions”
•
“Excellent access to Lactation consultant”
However many respondents highlighted less positive experiences.
18
•“I did have access to a Lactation help while I was on the ward post-delivery and once I was discharged if
you asked you could get it but they were often busy with new mums on the ward”
• “Couldn’t get appointment with LC”
• “LC was mentioned as I was expressing but she was too busy”
•“Was told that there were classes being run while the baby was in special care however was too concerned
about baby to attend many of these”
• I wasn’t helped as much as would like as my baby was in intensive care and on a separate floor to me. I was
up and down all the time; they did however leave me a pump to express but never showed me how to use it”
This view regarding staff not showing mothers how to use the breast pump was echoed by a number of
respondents. When Lactation Consultant services are available it appears that the services are very busy and
unable to meet the demand.
Psychologist
The data is not available to indicate the exact number of families that had access to a psychologist that
participated in this study, however it is clear that they are not currently available to all families of premature
infants in neonatal units in Ireland. Where a psychologist was available the comments were very positive
•“A psychologist checked on me often” and “I had access to everything they had to offer, they were
wonderful, informative and also supportive emotionally to me, even when I didn’t ask”
•One mother stated that “in hindsight I really needed a psychologist”. Another mother stated that “I
could have benefitted from seeing a midwife counsellor but she appeared to be only a Bereavement
counsellor. I recommend that all preterm births/traumatic births need referral to a counsellor”. Another
mother stated that “Excellent care for the baby but I think counselling should be offered to mothers of
premature babies”.
• “We had no exposure to a psychologist, may have been helpful as even now eight years on and two full
term births since, it is still very upsetting to recall”
•“I had literally no support and suffered post natal (depression) which I feel in some way due to lack of help
in the hospital”.
This gives an insight into the feelings of mothers of premature infants in Ireland currently.
Social Worker
Access to social workers during hospitalisation varied. There were many positive comments from respondents
regarding the support they received.
• “Social worker contacted me on day 2 and was lovely and gave helpful advice”.
•“Social worker was the only one we saw on a weekly basis unrequested. Anyone else we had to request to
see, nothing was ever offered”
•“Social worker spoke to all parents in NICU, made it her business to get to speak to all new parents and
help out with maternity benefit, and gave as much advice as possible. Very approachable”.
However social workers were not available in all NICU’s according to the respondents.
6. How would you rate infection control methods i.e. hand washing etc.?
Reassuringly, over 70 per cent of mothers rated infection control methods as excellent, or a rating of 5, while
a further 16 per cent rated these as very good, and six per cent as good. Almost three per cent answered
0, indicating they had seen no evidence of these methods. Almost four per cent of respondents thought
infection control measures were poor or very poor.
19
0 = 2.52%
1 = 1.16%
2 = 2.71%
3 = 6.40%
4 = 15.89%
5 = 71.12%
7. Please comment on the level of support offered to you while in the unit i.e. in the form of group
discussions, parent to parent support, hospital initiated support networks? (Level 1-5, 0= none)
Worryingly, over a quarter of women indicated they had received no support while in the maternity unit.
Thirteen per cent rated their level of support as very poor, while a further 14 per cent. This suggests wide
disparities in the level of support offered to mother of preterm infants, with a significant paucity evident in
particular units.
0 = 26.36%
1 = 13.18%
2 = 13.76%
3 = 15.89%
4 = 8.53%
5 = 22.09%
8. Was there a parent room and rooming in facilities before baby is discharged home?
Over 70 per cent responded that there was such a facility but almost 30 per cent replied no, again indicating
a wide range in the level of services and supports for mothers of preterm infants across Irish maternity
units.
9. Do you think a community neonatal nurse to aid the transition from NICU to home would have made
their experience easier? (Rate 0 to 5)
Almost 18 per cent of respondents answered 0 or left this field blank. Just over two per cent indicated that
they strongly disagreed, while five per cent said they disagreed. Seventeen per cent said they somewhat
agreed, while 10.5 per cent said they agreed with this. Nearly half of respondents said they strongly agreed
that a community neonatal nurse would have made their experience easier.
0 = 17.83%
1 = 2.33%
2 = 5.43%
3 = 17.25%
4 = 10.47%
5 = 46.32%
Post -Traumatic Stress Disorder/ Post Natal Depression:
1. Did you suffer from Post Natal Depression or Post Traumatic Stress Disorder?
Over 40 per cent of those surveyed replied that they had suffered from either post natal depression (PND) or
post traumatic stress disorder (PTSD).
4 out of 10 mothers of preterm babies have either post natal depression or post traumatic stress disorder.
This is a high percentage of preterm mothers who suffered mental health issues directly associated with the
birth of their preterm baby.
2. Did you find that your attending doctor was sufficiently informed about pre term birth to diagnose PND
and PTSD?
Almost two-thirds (63 per cent) replied that they felt their attending doctor had extensive knowledge/experience
of preterm birth. Thirty-six per cent said no, they did not find their physician had adequate knowledge or
experience of preterm birth. Less than one per cent said this wasn’t applicable.
63% attending a doctor had extensive knowledge of PND/ PTDS
36% attending a doctor felt they did not have sufficient knowledge on PND/PTSD
20
Rates of Mental Health Issues in Preterm Monthers
Parents with PND/PSTD
Parents not effected by PND / PTSD
Communication in the Neonatal unit:
1. Did you have sufficient literature to inform family and friends about RSV and the restrictions on
visitation, when baby was discharged from the unit?
While 58 per cent said the amount of information they were given in terms of potential infection and visitation
was adequate, the remainder (42 per cent) did not. Just over half of parents felt they were given adequate
information.
2. While in the hospital did you get any information about prematurity?
This question shows a 50/50 split among those who had received any information about prematurity while in
hospital – 50 per cent said they received information while the remaining 50 per cent did not.
3. While in hospital did you get any information about Irish Premature Babies?
Forty five per cent said they received information about the resources and support available via Irish Premature
Babies, but 55 per cent were not told about the charity. The charity sends information leaflets, booklets and
newsletters to every unit in the country.
4. Did the unit you attended have a discharge nurse? Rate the quality of the information relayed to them
upon discharge. (scale 0-5)
Over a third of respondents replied that the unit they attended did not have a discharge nurse. A wide variation
was seen in the perceived quality of the information relayed to families upon discharge. While around four per
cent rated it very poor and 10 per cent rated it poor, over 18 per cent rated it good. Almost 12 per cent rated
it very good, while 22 per cent said it was excellent.
0 = 34.69%
1 = 3.49%
2 = 10.08%
3 = 18.22%
4 = 11.82%
5 = 21.51%
7. How would you rate your involvement in the decision making process? (1-5)
Ninety-five per cent of respondents left this field blank, or rated their involvement as zero – this is hugely
significant as it indicates the vast majority of mothers who give birth to preterm infants are excluded from
decisions pertaining to the birth and/or the infant’s care.
A small number of respondents rated this as poor or very poor. Roughly two per cent said it was good.
Just two mothers rated it 4, or very good, while just one per cent of mothers rated it 5, or excellent. This
suggests that where the mother is involved in the decision-making process she is happy with the level of
engagement, advice, and support.
8. How would you rate the communication from various medical staff?
Again the vast majority of respondents (94.3 per cent) left this field blank, or replied “zero”. This paucity of
adequate communication from medical staff is clearly widespread across Irish maternity units.
21
Of the remainder, less than one per cent rated it 1 (very poor) or 2 (poor), respectively. One per cent said it
was average, or a rating of three.
One per cent gave it a rating of 4, or very good, while almost two per cent rated it 5, or excellent. This suggests
that where there is communication, it is generally of a high standard.
End of life
1. Did you have access to privacy near the end of life?
A small number of infants did not survive. The indications from the data are that there are significant
differences in terms of the specialist support and facilities available for parents of infants who did not live.
Three per cent of respondents indicated that they did not have adequate access to privacy at the end of life.
2. How did you find staff dealt with the handling of the death and arrangements?
Of those who had answered No to the question regarding privacy, the majority rated the staff’s handling of
death and arrangements as very poor. One rated it 3, or average/good, and another rated it four, or very good.
Of those who said they did have access to adequate privacy, one rated this as 1, or very poor. Two more rated
it as 3, or average/poor, and one as 4, or very good. Five of these rated the staff’s help as excellent.
Again this indicates a wide variation in terms of support/help for parents whose preterm infant did not survive.
3. Did you have access to counselling support within and beyond the unit?
Some 98 per cent indicated they were offered access to counselling services while two per cent were not.
22
SECTION B Questions asked in Patient
experiences in maternity units
Section B - Patient Information while in the unit
1) Year of birth
2)City of Birth: Not included in this report
3) Hospital of Birth: Not included in this report
4) Transferred hospital (If applicable): Not included in this report
5) Length of time in transferred hospital (If applicable) Not included in this report
6) Birth weight when born?
7) Gestational age (weeks)when born ?
8) Sex of baby?
9) Health problems that your baby had in the unit?
10) Was your baby readmitted to hospital at any stage?
11) Method of feeding baby upon discharge ?
Section B - Answers from Patient experiences in maternity units
1. Year of birth
This cohort of babies were mainly born between 1990 and 2014. A number of people surveyed were preterm
births themselves, they also registered with the charity to share their experiences.
6. Birth Weight
One baby weighed as little as 1lb 1oz - others were over 6lb at birth. A number of babies were born as early
as 24 weeks, while some were closer to full gestational age at 36 weeks.
7. Gestational Age
• 24 weeks gestation - 4%
• 25 weeks gestation - 6%
• 26 weeks gestation - 7%
• 27 weeks gestation - 9%
• 28 weeks gestation - 7%
• 29 weeks gestation - 9%
• 30 weeks gestation - 8%
• 31 weeks gestation - 9%
• 32 weeks gestation - 15%
• 33 weeks gestation - 10%
• 34 weeks gestation - 8%
• 35 weeks gestation - 8%
• 36 weeks gestation >1%
8. Sex of Baby
Sex of Baby
Males
Females
23
9. Health problems that your baby had in the unit:
(Please note this question is a reflection of health problems as reported by the respondents and may not
represent all the medical problems)
From the families registered with us there was a wide range of time spent within the hospital units. Some
babies spent periods of time as inpatients for as short as three days, others as long as six months and
everything in between.
•Mothers were asked about the health problems their babies presented with while still in the maternity
unit. These problems ranged from minor to major, and the majority of infants experienced multiple health
issues following birth.
The most common health issues of our registered neonates:
• Respiratory issues
• Heart problems
•Infections
• Brain bleeds
•Jaundice
• Bowel/intestine issues
Unsurprisingly, it was seen that respiratory difficulties were the most widely reported. Seven per cent of
parents reported non-specific breathing difficulties - 10 per cent of infants reported being treated with
continuous positive airway pressure (CPAP) and many of them were placed on ventilation for a period of
time after birth, with a further cohort reporting the need for oxygen dependency.
Respiratory Problems In The Neonate
Chronic Lung Disease
Collapsed Lung
Fluid / Bleeding on the Lungs
Under Developed Lungs
Lung problems were an issue for almost one-eighth of babies, and these included: collapsed lung (one or
both); undeveloped lungs; chronic lung disease; fluid and bleeding on lungs, as well as infection.
• Collapsed lung – 35%
• Chronic lung disease – 35%
• Fluid on lungs – 8%
• Under developed lungs – 10%
• Bleeding on lungs – 2%
Other common health issues in our registered neonates:
• Also prevalent was jaundice, which affected 17% of the infants registered.
• A significant proportion of 10% needed blood transfusions, many of these needed transfusions multiple
times. Three per cent had diagnosed anaemia.
• Three per cent of babies experienced brain haemorrhages of varying grades of severity.
•
6% of our surveyed neonates reported health issues with their hearts. These issues included:
•PDA
• Heart murmur
•Bradycardia
24
• Hole in heart
• Heart failure
•In terms of infections, around 10% reported one or more infections while still an inpatient in their hospital.
These included:
•viral
•lung
•gastrointestinal
• E. Coli
•MRSA
• P
reterm babies do not develop their suck/swallow reflex until around 34 weeks gestation. Even after this
point, they tire easily. This means that all babies below 34 weeks gestation will need to be tube fed, this
is relevant to 83% of our registered neonates. Many preterm babies suffer with digestion issues. Four per
cent reported gastrointestinal reflux or GERD.
•It is widely known that preterm infants born before 34 weeks are unable to regulate their own body
temperature. In our survey 83% of infants were born before 34 weeks gestation so would have required
care in an incubator.
10. Was your baby readmitted to hospital at any stage?
Mothers were asked if their babies were readmitted to hospital at any stage. 45% of infants were readmitted
on at least one occasion following discharge. In some instances many months had elapsed before the infant
was readmitted.
The reason for re-admission was not cited in all cases, the most common reason for re-admission was
reported as breathing difficulties and infections. Hernia repair was also a common reason for re-admission.
• Breathing difficulties/lung infections
• Emergency surgery
• Blood transfusions
•Meningitis
Readmission To Hospital After Initial Discharge
60
50
40
30
20
Readmission
No Readmission
Neonatal / Infant Death
10
0
12. Method of feeding baby upon discharge ?
•
T he main method of feeding the preterm infants was also determined. One third reported
breastfeeding but for many this involved using a tube or bottle with expressed breastmilk. A
significant proportion reported using a mix of both bottle and breast feeding. Almost two-thirds
artificially fed exclusively.
• B
reastfeeding is important to preterm infants, as it seems to provide even more pronouced health benefits
than to infants born at term age. It is well documented that breastmilk is protective against many infections
including Necrotising Entercoloitis in preterm infants (23).
25
•A quality Improvement Project (QIP)in University Hospital Limerick led by Dr. Roy K Philips was presented at
the recent Association of Lactation Consultants of Ireland Conference. All low birth weight and extremely
low birth weight infants receive only mothers own breast milk or donor breastmilk on the NICU in Limerick.
They reduced the rate of NEC to 0 for 2013. This QIP could be adopted by all neonatal units.
Feeding Methods While Neonate In NICU / SCBU
Exclusive Breastfeeding / Expressing
Combined Breast Milk & Formula
Artificial Feeding (Formula)
• Artificially fed exclusively with formula - 52%
• Exclusively breast fed - 14.6%
• Exclusively fed breast milk via bottle - 17%
• Combination of breast/bottle (formula) - 6%
• Combination of breastfeeding and expressed breast milk - 2.3%
• Combination of expressed breast milk and formula - 4%
• <1 % mention all three - breastfeeding, expressed breast milk via bottle and formula.
*9% left this field blank
27
Section C - Questions asked in post discharge
and Community Care
Post discharge and Public Health Nurse
1) Length of time attached to hospital aftercare?
2) Did you know your rights & entitlements?
3) Did your Public Health Nurse make first contact?
4) How soon was it after your baby’s discharge?
5) How many times did you see your Nurse?
Community Care
1) How did you find the support in the community?
2) Could you expand on your selection?
3) What follow up therapies did your child attend?
4) Any other therapies:
5) What length of time did your child attend?
6) Did you avail of these therapies private/public?
7) Assess your child’s access to therapies?
8) Could you expand on your selection please?
9) Did your child require a Special needs assistant?
10) Did your child complete State examinations?
Section C - Answers in post discharge and
Community Care
1. Length of time attached to hospital aftercare?
Roughly 15 per cent replied that their infants remained attached to hospital aftercare for between one and
five years. Seven per cent said it was between one and six weeks, while 12 per cent said it was between two
and 18 months.
Over half said their infants were still attending hospital aftercare.
2. Did you know your rights & entitlements?
A shocking 60 per cent of respondents said they did not know their rights and entitlements – a number
commented they were not aware they had any rights and entitlements having had a preterm infant. For
those that did, a number commented that they were not told of any and only found out via personal research
(including the Irish Premature Babies booklet). The charity have sent booklets to every neonatal unit on
Rights & Entitlements.
Rights & Entitlements
How many parents knew about their rights
How many parents knew nothing about their rights
28
3. Did your Public Health Nurse make first contact?
In the vast majority of cases, the public health nurse did make first contact.
17% (82 respondents) did not answer the question
78% (382 respondents) answered Yes
5% (27 respondents) answered No
4 How soon was it after your baby’s discharge?
The public health nurse mainly made contact within the first few days following birth, although seven per cent
reported it being a number of weeks, and in a couple of cases it was as late as three months post-discharge.
According to six per cent of respondents, the public health nurse got in touch prior to their baby’s discharge.
Community Care
1. How many times did you see your Nurse?
This varied widely but most respondents were visited by their public health nurse regularly, and on several
occasions. In most cases the visits were weekly, although some reported more regular visits. A small number
reported that the public health nurse had only visited once or twice.
2. How did you find the support in the community?
A staggering 60 per cent replied that community support was “non-existent”. Many respondents commented
that the only support was the public health nurse, while a number admitted they felt isolated and alone in
terms of caring for their preterm infant. Of the 12 per cent that responded “excellent” or “very good”, this
support mainly came from family and friends, although a small number mentioned the Early Intervention
Team. The GP, physiotherapist, and lactation consultants were also mentioned, as was the public health
nurse. Fifteen per cent rated it “average/good” but even a number of these commented that access to
support was difficult or that they found follow-up very poor.
Support In The Community For Parents Of Preterm Babies
Non Existent
Average / Good
Excellent / Very Good
3. What follow up therapies did your child attend?
Preterm babies required a range of adjunct therapies, including: audiology; physiotherapy; psychology;
occupational therapy; and speech and language therapy.
•Ninety per cent of infants required physiotherapy*, with small numbers in need of the other therapies. Ten
per cent required occupational therapy and four per cent audiology assessment and support. Two per cent
also saw a dietician and one per cent saw a psychologist.
• Some were in receipt of multiple therapies.
• A small number indicated waits of 2-4 years for access to these therapies.
*(This number seems very high for physiotherapy in the community, it is possible that the babies had
the physiotherapy done in hospital and parents are accidentally putting it in this section as well. The
neonatal development teams in the hospitals have very good physiotherapy departments)
29
4. What length of time did your child attend?
While some infants had once-off visits with these therapists, ten per cent commented that their babies are
still attending. Others explained that their children required therapy over a period of several years. Almost all
responded that they had accessed these therapies via the public health service – just two per cent indicated
that they had been seen privately.
5. Assess your child’s access to therapies?
Eighty per cent of respondents rated their child’s access to therapies as “very poor”. Eight per cent rated it
“excellent”, while five per cent rated it very good. Seven per cent rated their access as good/average and 1.5
per cent rated it as poor.




80 % parents rated access to support therapies as very poor
1% of parents rated access to support therapies as poor
7% of parents rated access to support therapies as good/average
8% of parents rated access to support therapies as excellent
6. Did your child require a Special needs assistant?
While many children had not yet reached school-going age by the time they registered with Irish Premature
Babies, five per cent replied that their child requires a special needs assistant in school currently.
7. Did you child complete state examinations ?
There were no answers to this question.
Please note the following:
The next follow up publication on these families will highlight much more detail into the last five questions.
A significant number of children are still under the care of the Neonatal development teams. Our anecdotal
experience in the last five years is highlighting a large proportion of families as are having huge problems
accessing allied support therapies post discharge from the hospitals. These therapies include speech and
language, occupational therapy and psychology.
PART
THREE
31
Case Study 1 - Sophie
I decided to have a final holiday before I got too big and the nesting began on my first pregnancy. I work for
Aer Lingus so decided last minute to head to Orlando for one week. All scans had been great and I was feeling
great. I had a scan the week before we left and was advised everything was perfect. We arrived in Orlando on
Tuesday June 4th and on Thursday June 6th I was admitted to Winnie Palmer hospital. Unknown to me, I was
already 10 dilated cms and ready for my waters to break.
The medical team explained two options to me as the baby was under 24weeks of gestation, thankfully she
made an effort to breathe herself so the team intervened. Sophie was born Friday June 7th at 2.45pm at 23
weeks and 6 days, immediately she got whisked away to NICU by specialist doctors. I was then looked after
and brought up to my room.
Next day a social worker and lactation specialist came up to me. I was handed an electric pump and told
that was mine until Sophie was discharged. For the four months I was there in Orlando with Sophie the
social worker visited us every Friday to see how we were doing, if there was anything we needed or had any
quaestions that they could answer.
Sophie was ventilated for 6 weeks (23wk-30wk). She then contracted E-coli and isolated for one week, with
this she had many apnea moments. She also had four blood transfusions as her red cells were low due to
bloods being taken all the time (26wk-30wk). She was then on CPAP which was hard as the mask was a
standard size and her face was so tiny that we had to constantly check it was still on. She was then weaned
down to normal oxygen by a NAVA machine (Neurally Adjusted Ventilatory Assist) .Each day she was carefully
monitored for bradycardia’s or apnea moments and if stable the oxygen was lowered eventually to room air.
This procedure was slow and took weeks to get down . She contracted the RSV virus in the middle of August
when she was 34weeks and had to be re ventilated which set her back to the beginning as she was starting
to be weaned off the oxygen. It was touch and go for the first few days as we were not sure if she would
survive. We were so worried about risks from being ventilated again and the problems that result from lung
prematurity.
From first two weeks in the hospital we could pick a primary care nurse for Sophie, we wanted someone who
was good with Sophie and also whom we had a rapport with. You need someone who you can trust your most
precious baby with. When primary nurses were rostered they were responsible for
their primary baby, there was a continuity of care with Sophie and the
primary care nurse knew everything about Sophie and her clinical
needs and development right throughout her admission.
Having one primary care
nurse attached to
Sophie
this
was a huge
relief for
32
us especially on bad days when she had so many Bradycardias’ and had to be resuscitated several times. Each
primary care nurse is given a cell phone so at night if we woke up worried or upset we could call the landline and
get connected straight through to Sophie’s nurse on that shift.
During Sophie’s time in hospital, we lived in a Ronald McDonald house on campus which had 40 rooms.
There was also a children’s hospital on the grounds of the Winnie Palmer hospital and the Ronald McDonald
house was used by families and friends of children in the two hospitals. This made our first few weeks a lot
easier knowing we were two minute run away when Sophie stopped breathing if we weren’t there. Preterm
babies can get sick very quickly, it was peace of mind knowing we were so close to her all the time. The house
provided meals for all the families each night at 6.30pm-7.30pm. Every night a volunteer group would come
in could be local firefighters cooking burgers to Chinese medical students making their speciality dishes.
We arrived home by medical jet on October 4th and brought straight to one of Dublin’s main maternity hospital
where Sophie was admitted for four weeks. The nurses and doctors were lovely and I cannot fault them but
the assistance for parents was shocking in contrast to our experience in America. Not once was I asked how
I was feeling from a professional which was very different to my experience in the Winnie Palmer hospital. I
saw mothers come from the ward to their 35 weeker in an incubator and no one speaks to them for hours.
Regardless of whether a baby is 23 weeks or 35 weeks they are still a preterm baby to that mother and each
deserves some support. The nurse ratio is just too high for staff to sit down and talk to parents. The staffs’
main priority was the babies but in America, they managed to support us all including the parents. Each
morning I sat in traffic for hour and half had to pay 10 euro every three hours for parking outside the hospital
Monday to Friday. To be honest, I would have preferred to have been in Orlando for Sophie’s four extra weeks
where I felt we were treated as a family unit. While Sophie was in Dublin, I felt there was very little help, I
ended up going on to the internet and finding the charity Irish Premature Babies
on Facebook. That made a difference to me as I saw messages from
other mums and dads going through the same experience
as me and my husband. At least by linking in with the
charity, I had somewhere to turn to for support.
We finally got Sophie home four weeks later
on the 30th of October. However, I was
due back to work November 25th the
following month. As Irish maternity
leave kicks in the day the baby
is born regardless how early or
sick the baby is. For babies
like Sophie who require a
long duration in hospital,
this system in extremely
unfair. My daughter
deserved more than
one month at home
with her mother. It
was only due to the
kindness of my work
colleagues in Aer
Lingus who were
allowed to donate a
day of their annual
leave to me that I was
given the opportunity
to stay at home with
Sophie for six months.
We needed that time
together as a mother
and a daughter.
33
Case study 2 - Michael & Gabrielle Dodog
Our first son was almost a year old when, we decided we wanted to have another baby. My first pregnancy was
full term and there were no complications, so we presumed the second one would be the same. We couldn’t
have been more mistaken. My first scan showed that we were having twins. The doctor told us it was a highrisk pregnancy. We were a little scared, but excited at the same time. My pregnancy progressed well, other
than the usual symptoms and extreme tiredness. At 25+6 weeks gestation, I started feeling pain in my lower
abdomen. I went to my doctor who told me it was an infection and I was prescribed antibiotics. However, the
next day the pain was so bad, I had to go to the hospital. Within minutes of arriving at the hospital I found out
I was in labour. I couldn’t believe what was happening. I was given medication to try stop my labour but it only
delayed it for several hours. At 26+1 weeks gestation, I had our twins, a son weighing 1040g and a daughter
840g.
The babies were taken straight to the Neonatal Intensive Care Unit (NICU). We decided to call our little babies
after two angels, Michael and Gabrielle, for extra help. When I saw them for the first time it was so emotional,
my two little babies wrapped in wires, with tubes all around, it was heart breaking. The medical team told us
that there was a problem with Gabrielle. There was air in her abdomen where her feeding tube had perforated
her stomach. She needed to be transferred to Dublin for further investigation. All I remember is hearing the
nurse telling us that a priest was on the way, and that we could christen our babies. I looked at my husband
speechless and in total shock but he reassured me that everything was going to be fine.
After reaching the hospital in Dublin, we asked the doctors what were our little girls chances of survival were,
at that point we were told it was fifty-fifty. We cried so much leaving her in Dublin, but we needed to get back
to Michael. Gabrielle was brought to theatre the following day. She recovered really well after the surgery
and she was back home within three days. We were so happy and relieved. We were really worried about her
because she was much smaller than her brother.
Michael was on continuous positive airways pressure (CPAP) from the day he was born. On the seventh day
he developed a very serious life threatening intestinal infection called Necrotizing Enterocolitis (NEC). He had
to be fully ventilated at that point. We found it hard to believe what was happening. We learnt that you can
only take one day at a time with a premature baby. Michael was so unwell, even smallest change of position
caused him to stop breathing. A few days after contracting NEC, I got a phone call from the hospital telling me
that Michael’s bowel had perforated and he needed to be transferred to Dublin.
We assumed because he was bigger than his sister, he would be stronger. However, when the doctors
examined him, they were not sure if he would survive. He needed to have few centimeters of bowel removed
and a stoma needed to be put in. A blood culture then revealed he had E-Coli. Michael was put back into
the NICU. A few days later we received more bad news. He also needed to have heart surgery-Patent Ductus
Arteriosus (PDA). I just could not bear to see my little baby endure so much. Thankfully his surgeries went
well. His stoma was slow to work but eventually things began to improve. After 3 weeks in Crumlin Children’s
hospital in Dublin, Michael was transferred back home.
We were so happy having our two babies together. Gabrielle at this point was doing well but then she was
diagnosed with a grade II bleed on the brain and she developed breathing problems. However, within a few
days the twins were transferred out of Intensive Care. Michael came off CPAP but Gabrielle developed a long
term lung condition called chronic lung disease. She also needed the same heart surgery as her brother, so
she was slower to breathe on her own. Michael had to go for more surgery in Dublin but after 104 days in
hospital he was eventually discharged. Gabrielle spent a little less 91 days.
Michael and Gabrielle are 4 years old now. The first 2 years since they left hospital were extremely hard. There
was lots of doctor’s appointments, specialists, clinics etc. They didn’t develop as a full term child normally
would. Gabrielle had a problem feeding, first few weeks after we left hospital she was taking only 20-30 ml of
milk at the time. She cried a lot in the evenings. On the bad evening her crying could last for 3 hours. Doctors
were not sure what was wrong, they presumed it was colic. I started researching myself, and find out that
lactose intolerance could cause symptoms like that. I went to my GP and he prescribed me lactose free milk.
My little girl improved within days and after a week she was feeding normally. Gabrielle was developing quite
well; she reached all her mile stones nearly at corrected age. When she was 2 year old she was discharged
from all specialists. She is very bright little girl. She just started Junior Infants this Year.
Michael needed one more surgery after leaving hospital, as he developed surgical hernia. He had that
34
repaired in Dublin in 2012. Michael was very different comparing to his sister. He was not as lively. His mile
stones were much delayed. He was slow to talk, slow to sit, crawl, walk etc. Michael was under constant
observation from all specialists- Paediatric doctor, physiotherapist, occupational therapist, speech and
language therapist, and psychologist.
Michael’s behaviour was very concerning. He cried a lot for no reason, head banging, had outbursts of anger,
episodes of staring, he couldn’t keep his balance. When Michael was about 2 years old, I first time heard that
he might have Cerebral Palsy or Autism. When Michael was around 3 he got diagnosed with Cerebral Palsy,
since he received Botox injections in his leg. He has improved a lot and he is able to walk independently. In
August 2013 Michael was diagnosed with autism. Last year Michael was refused place in preschool because
of his diagnosis, he had to get a home tutor instead. This year he is in special class (“Early class”) for children
with ASD.
Having twins so prematurely changed our lives completely. We struggled so much in every areas of our lives
from financial to emotional problems. When the twins were still in hospital our financial situation was awful.
We lived in the city the twins were hospitalised at the time but several times Michael and Gabrielle were in
hospital in Dublin. Our hearts broke as we were not able to afford trips to Dublin as often as we wanted.
When the twins were 3 months in hospital, we had to put our little boy David into a crèche, he was just a year
and a half. We did not have family here in Ireland so he had to be put into the crèche so we could spend
time with the twins, this put a big financial strain on us. We had to pay for parking every day at the hospital
which cost us a fortune. When the twins left hospital it was not much easier. I was not able to come back to
work as the twins needed so much care and attention. There were times when we had at least one specialist
appointment during week, and at least one if not 2 GP visits weekly. There was no way I could keep a job with
their medical needs.
The last four years all our family struggled emotionally too. At first we hoped that, we could just forget about
whole experience and get on with our lives. But premature birth for me its part of my life that can never be
forgotten. For the first 2 years after twins were born I was not able to come near the hospital without having
a panic attack. I wanted to cry every time I saw a pregnant woman or a baby.
In July 2012 after having emotional breakdown my friends took me for a Christian meeting and since I started
improving. My nightmares and panic attacks stopped. I started knitting little hats for premature babies and
found it very relaxing, and peaceful. Instead of thinking
over and over about experience of premature
birth I found way to keep my mind occupied.
Our experience has been life changing.
35
Cast study 3 - Ornagh 33 weeks
and Cara at 29 weeks
Ornagh was born at 33weeks weighting 4.5lbs on the 30/07/11 . For 4 weeks previously I had been in
and out of hospital with pregnancy complications, so it wasn’t a huge shock when she arrived 36 hours
after I was discharged from the antenatal ward for the third time.
The big shock was heading into the NICU for the first time. I didn’t get a chance to hold Ornagh when she
was born, so I couldn’t wait to see her and hold her. The disappointment I felt when I got down and she
was encased in an incubator will be with me forever. I couldn’t see the face of my beautiful new baby
because she had a CPAP mask on, I couldn’t hold her and I couldn’t feed her. The most I could do was
just gently stroke her hand for short periods as she distressed easily. The noise is something that is very
hard to bear. Constant electronic beeps and alarms, when you are trying to focus on this precious bundle
and praying it is not your own baby setting them off.
The staff is very stretched. I understand it is difficult to spend time with each and every family to explain
everything, but it is a terrifying time. Ornagh was almost three days old before I held her. It took me
sobbing uncontrollably to my husband to get a nurse to set it up for me. It was magical, but due to shift
changes and check boxes, I only got a short time with her. Trying to explain that to someone who got
handed a lovely pink bouncing baby moments after birth is impossible. I believe Kangaroo care is vital
and should be promoted more and encouraged more. Whether this takes volunteers who are trained
to handle the babies and set the mums and dads up or an extra nurse per room, this should be an
important agenda item.
Breast milk is a much sought after commodity in the NICU. The nurses explain the reasons, avoiding
NEC and the right nutrients etc., but no one shows you how to do it correctly. The equipment is not
provided without insistence and the encouragement and guidance is not provided. I didn’t see a lactation
consultant on either of my post natal stays, no one explained the importance of the 8 times rule with the
middle of the night pump and no one told me what was the correct equipment to use. One of the most
upsetting times for me in the NICU with Ornagh was on her 2nd night in NICU a nurse came into me at
approximately 2am and woke me looking for milk for Ornagh, I was exhausted and stressed and I was
made to feel like a total failure. I panicked and rushed down as soon as I could, only for the NICU staff to
reassure me that it was not a big issue and she was only getting the milk as an addition to the fatty feed.
As a result I only managed to feed ebm to Ornagh for 6 months, and mainly due to information provided
by peers and not professionals.
Thankfully Ornagh is now a beautiful independent 3 year old, who has minor issues as a result of her
early arrival, such as sensory issues and speech delays, but with the help of our PHN we are on the right
path.
I wish that there was more support for mums and dads during the experience. I felt very isolated and
alone during the experience as I had not found IPB at that point. I felt that the medical staff was pushed
to the limit and there weren’t enough support staff available such as lactation consultants or counsellors.
PTSD is a very real result of experiencing preterm birth and separation from your baby, but no one
mentions it at all and no one offers support.
Cara was born at 29 weeks weighting 3lbs 4ozs on the 02/02/2014 . Cara’s birth was traumatic for her
and me and she is only here thanks to the help we received from the Gardai and the staff in the Rotunda.
Cara was partially delivered upon arrival at the hospital following a garda escort to the hospital from
home. The guard in the control room had phoned ahead so we were luckily met by emergency room staff,
ready to help. Cara was delivered via emergency C-Section and was taken by a neonatal team directly
to the NICU.
A huge concern that I have for mums of preterm babies, who are still inpatients is the access to healthy
meals. I spent 6 nights in the hospital and I don’t think I ate more than one meal a day while I was
there as no one left me a menu to complete and no one advised me of the times for meals, so between
spending time with baby, providing milk for baby and catching a little sleep, food is the last priority. This
should not happen, nor should the practice of prem mums being roomed with mums and healthy babies.
It is soul destroying to spend the night listening to new babies crying when you don’t have your baby
36
beside you. There is a requirement for a separate room for mums without babies, no matter the reason
for it.
Although I had experienced the NICU a short time before with Ornagh, having a micro preemie was a
totally different experience. Cara was in the NICU for a much longer time and tiny. She had more intense
care as she required it and I was glad that I knew what was going on, as the NICU seems more stretched
than the past and therefore we maybe didn’t get as many detailed explanations.
Although the level of care we received from the NICU staff was amazing, I was not happy with the overall
experience. I felt like my opinion was not requested and when I offered it, I was ignored. Having prior
experience of the NICU environment, a preemie baby and children in general, I wasn’t clueless, but I was
treated as if I was by some. No one told us that we could avail of the staff canteen for lunches, no one
showed us to the family room, where we could just take a break from the noise and the emotions for 10
minutes. I requested an appointment with the lactation consultant more than once and I didn’t see her
once within the 5.5 week stay. During our hospital stay I lost a considerable amount of breast milk, as it
was removed from the fridge and not stored correctly, so it had to be thrown out. This is an unacceptable
situation to occur with such a precious commodity.
The follow up care received was not something I would like to experience as a new parent, with no
knowledge. I sought help more than once for development delays and other issues for Cara and my
concerns were disregarded. I asked for help because Cara didn’t sleep for almost 19 months and no one
offered any help or advice. I thought I was a bad parent, until I recently learned that she has Cerebral
Palsy, so it is not surprising she was waking in pain on a regular basis and wasn’t meeting her physical
development milestones.
Having a premature baby does not end when you bring them home from the hospital. The follow up and
the endless potential complications are always there, but I don’t think that there is adequate support.
As parents we didn’t all get the same advice or communications when we were leaving. There should
be more consistency and access to a helpline for medical queries as it is not practical or safe to take a
premature baby to a doctor’s surgery full of infection that could prove very serious for them.
PART
FOUR
39
The Current Role Of Irish Premature Babies
Irish Premature Babies is the only registered charity working to help families from all over Ireland. We were
set up in 2009 and work with hundreds of parents each year. The charity is run by a board of directors and
volunteers. There are volunteers working up to 40 hours a week pro bono to help support requests by families
and medical professionals. We provide a number of essential services for families that no other organisation
are providing to Ireland’s preterm families. We rely on independent fundraising to both support families and
buy equipment for the Neonatal Intensive Care units around Ireland.
Our services to parents are as following and IPB are the only charity providing the following services to families
of preterm babies.
•Hospital grade breast pump rental scheme. We have 8 pumps that we lend out to families. Many parents
can’t afford the fee from private companies renting our pumps so we either charge €40 per month or loan
them free of charge for a limited time.
•We link mothers with professional lactation consultants around Ireland. If mothers are unable to pay for
this service, the charity will pay to assist the mother and baby establish breastfeeding.
•We provide professional counselling for families. We will pay for 4 sessions for people who are suffering
from post natal depression, post-traumatic stress disorder or who require bereavement counselling.
•For parents of multiple births, such as triplets or quads, who are discharged with equipment such as O2,
we will try help with a home discharge care package. The grant we offer when available is €800.00 and
this will help parents with home help for those first few weeks at home. The government was providing a
grant for multiples but this was rescinded in the budget of 2012.
• W
e provide free burial outfits for babies from 1lb upwards and when available we will help with a grant
towards funeral costs. Some grants will be upwards of €500.00
• W
e provide free/discounted workshops for parents so they can learn vital skills such as paediatric first aid,
expressing/breastfeeding preterm babies, sensory processing disorders in preterm babies and emotional
wellbeing for parents.
•We also provide Healthcare professional workshops on breastfeeding the premature infant.
•We have helped with funding allowance of €1500.00 for parents whose children have Cerebral Palsy,
and require selective Dorsal Rhizotomy. This treatment is not available in Ireland and gives children with
Cerebral Palsy the opportunity to walk.
•We provide a means for parents to connect each other. We provide family days out, coffee mornings, a very
busy Facebook page (over 40,000) and a forum on our website.
•We provide care packages for parents. We get donated items from parents and businesses and we
redistribute them to families who are struggling financially.
•We help families who are struggling with travel expenses. Many families have to travel long distances for
months to visit their preterm baby. The travel expenses can put a huge financial burden of families living
week by week.
•We help families with a night or two for emergency accommodation. If a preterm baby is transferred up to
Dublin for treatment. There is no accommodation for that parent. Unfortunately we can only help with such
a small contribution. For families whose preterm babies are in Dublin for months, this is just a miniscule
amount.
• W
e provide information leaflets for families to help them understand issues associated with their preterm
birth. We provide information booklets for families and we provide a newsletter for families.
• W
e published the first book on prematurity relating to the family experience. We catalogued that
experience of 80 families around Ireland into a book called “Tiny Footprints”. It gives a unique insight into
40
the experience of having a premature baby on the family.
•We have helped families with meal vouchers to ensure mothers get a least one healthy nutritious meal a
day.
•We have helped pay for assessments for families who are struggling with their children or toddlers needs
and we have also paid for therapy for a number of preterm babies who have major developmental delays.
•We make one off hardship payments based on individual circumstances. For example, one mother had
no fridge to store the Synagis injection; the community welfare officer would not help the family. They had
worked, but both were made redundant and they needed the medication to protect the baby against the
RSV virus. We bought a small fridge for the family.
•We provide home packages to parents’ accommodation in Temple Street and Crumlin hospital. We send
packages with tea/coffee/biscuits/water into the parent’s accommodation.
•We refurbish parent rooms in hospital. In 2013, we refurbished one large room and two smaller rooms
in Crumlin hospital. This year, we are going to Cork University hospital to refurbish a parent’s room. Many
preterm babies will spend time in children’s hospitals and when parents have to stay a number of weeks
or months, it is nice to be able to provide parents with a little home comfort.
In the last five years we have fundraised with a number of individuals and businesses and together we have
donated almost €200,000 worth of equipment to several Neonatal Intensive Care Units around the country.
OUR RECOMMENDATIONS
1)
The family unit has the right to stay together. There needs to be designated provision of
accommodation for families in Dublin. Parents, especially mothers need to be close to their baby. It
benefits both the mother and the baby in the short and long term. Every mother should have the right
to be with her baby.
2)The right to professional lactation support. If a mother has problems expressing milk, she should
be linked in with a lactation specialist immediately. Many hospitals are incredibly under resourced in
this area. There needs to be more specialist staff allocated to the hospitals and more resources for
training in the hospitals and particularly in the community.
3)
T he right to the hospital grade breast pump. Every mother who wants to express milk should be
given a hospital grade pump for her use both while she is in hospital and while she is at home. Each
preterm baby has the right to get its mother’s breast milk. Money should not be an obstacle for a
preterm baby to get the best nutrition possible.
4)Access to professional counselling. When dealing with life changing traumatic events, it can have
a detrimental effect on one’s emotional well-being. Mothers and fathers should have access to
psychological support both while their baby is in the NICU and in the community afterwards.
5)Access to a parent room in the hospital. There should be an allocation of one room in a hospital for
parents. This room would be used for parents to get respite from the noise and stress of the Neonatal
unit. Fellow parents can be a great source of support to each other. To provide an environment for
parents to sit and meet each other, would be of huge importance addressing issues such as isolation
and loneliness often felt by parents.
6)
Privacy. There should be a private room attached to all NICU’s/ SCBU’s so medical staff can discuss
sensitive, confidential and difficult conversations with parents. All parents have the right to privacy.
Some of the units are so busy that incubators can be lined up beside each other and parents
inadvertently overhear medical professionals discussing sensitive medical information relating to
other preterm babies. It is extremely unfair on both the staff and parents.
7)Training and Resources for medical staff. We are incredibly lucky in Ireland to have some of the
most wonderful staff working in the neonatal units around Ireland. Professional neonatal staff
41
should be given every opportunity to develop and enhance their skills. There should be adequate
resources made available to neonatal to further develop their professional training. Many of the units
are working under incredible pressure and are doing the best work they can with the resources they
have available. There should be adequate numbers of staff employed in the units to help alleviate
the stress on neonatal staff.
8)
dequate equipment in the neonatal units. The units need to have the equipment so they can they
A
can provide the clinic support to any baby that needs it. Several of the units, we have visited over the
years, urgently require new equipment .It is imperative that staff are properly resourced so they can
do their job.
9)
xemption of tax on donated medical equipment. The UK have a system in place whereby there is
E
zero rated VAT added to donated charity funded equipment. Our charity has donated equipment to
neonatal units around Ireland and has to pay the full of VAT rate. This is very unjust to charities like
ours who trying to buy equipment that the government and HSE should be doing in the first place.
10)
Close to home. Where possible, both mother and baby are cared for in the same hospital and
neonatal unit as close to the family’s home as the baby’s condition allows. This would mean that
units would have the necessary skills and equipment to carry out the clinical needs of the baby.
11)
Subsidised travel. When babies need to move away from a local neonatal unit, there should be
financial support or subsidised travel given to families in the form of train/ bus tickets or vouchers
for petrol.
12)
Early Intervention. This is the significant factor in improving the long term outcomes for preterm
babies. It is imperative that babies have timely access to allied health professionals with specific
neonatal or paediatric training while the baby is still in the neonatal unit. More resources should be
available to ensure that the neonatal units have enough allied health professionals in each hospital.
13)
ome care child care. In Australia, the government provides support for families who have at least
H
three children under school age. The situation in Ireland is that preterm triplets and quads are sent
home without any support or help to the family. Even if the babies are on heart monitors, apnea
monitors, or oxygen, the parent still gets no support.
14)
Extension of tax relief. If a parent has a baby in hospital, they should be helped with all the additional
costs associated with that hospitalisation. Parents should get tax relief on parking costs, travel costs
and accommodation costs.
15)
Amendment of the Maternity Acts 1994 & 2004. Babies and mothers have the right to spend
precious time together. This right is already recognised by the acts. But it does not take into account
length of time a preterm baby can be hospitalised. We would like to see that all mothers of preterm
babies born before 32 weeks get an additional four weeks paid leave.
16)
Establishment of an out-reach clinic for preterm children. Not all problems associated with preterm
birth present themselves while the baby/toddler is attached to a hospital. We are finding that the
emotional, social, psychological and educational problems may not be apparent until the child is 3 or
older. At this stage, the majority of preterm babies have been discharged from their developmental
monitoring.
17)
Investment in educating community professional health care workers. The experts in the field of
neonatology work in the neonatal units. We would like to see a development of training for public
health nurses in the field of preterm babies. The public health nurse is one of the frontline links with
parents in the community. We believe public health nurses would hugely benefit from additional
training in the area of caring of a preterm baby.
42
References
(1)
WHO- Born too soon- Born too soon: the global action report on preterm birth’ A ISBN: 9789241503433
(2)
Perinatal Statistics Report, (2012), Health Research and Information Division, ESRI published
November 2013, ISBM 978-0-7070-0361-0
(3)Stevens-Simon C, Orleans M (Sep 1999). “Low-birth weight prevention programs: the enigma of
failure”. Birth 26 (3): 184–91
(3)
WHO- Born too soon- Born too soon: the global action report on preterm birth’ A ISBN: 9789241503433
(4)
European Perinatal Report- Health and Care of Pregnant Women and Babies in Europe in 2010
(5)“The worldwide incidence of preterm birth: a systematic review of maternal mortality and morbidity”
Stacy Beck a, Daniel Wojdyla b, Lale Say c, Ana Pilar Betran c, Mario Merialdi c, Jennifer Harris
Requejo d, Craig Rubens e, Ramkumar Menon f & Paul FA Van Look g - Bulletin of the World Health
Organization 2010;88:31-38. doi: 10.2471/BLT.08.062554
(5)Swammy, G.K, Ostbye, T, Skjaerven, R. (2008). Association of Preterm Birth with Long-term Survival,
Reproduction, and Next-generation Preterm Birth. Journal of the American Medical Association, 299
(12): 1429-1436
(6)
The problem with late preterm birth. UK Healthcare, Kentuckys Health Information resource.
(7)Hodek at al “Measuring economic consequences of preterm birth, methodical recommendations
for the evaluation of personel burden on children and their caregivers” published by the National
Institute of Health.
(8)
NNTP, National Neonatal Transport Programme, Anne Bowden.
(9)
Dublin Street parking service, website www.dsps.ie, costs & zones.
(10)
National Consumer Agency, published February 2011, Childcare Price Survey.
(11)
Bedandbreakfastworld.com, Dublin, an average of 59 B&B’s.
(12)
Tripavigo.ie, Dublin hotel accommodation.
(12)Irish Premature Babies- Feeding Survey-For premature and ill babies 2010. Allison Fegan Molloy &
Dr. Genève Becker
(13)
Central Statistics Office, Earnings & Labour Costs, 2012, ISSN 2009-5023
(14)Doyle LW, Ford G, Davis N; Health and hospitalistions after discharge in extremely low birth weight
infants. Semin Neonatol. 2003 Apr;8(2):137-45.
(15)pulmonary function. Can Respir J. 2011 Sep-Oct;18(5):265-70.
Larroque B, Ancel PY, Marret S, et al; Neurodevelopmental disabilities and special care of 5-year-old
children born before 33 weeks of gestation (the EPIPAGE study): a longitudinal cohort study. Lancet.
2008 Mar 8;371(9615):813-20.
Marlow N, Wolke D, Bracewell MA, et al; Neurologic and developmental disability at six years of age
after extremely preterm birth. N Engl J Med. 2005 Jan 6;352(1):9-19.
Foulder-Hughes LA, Cooke RW; Motor, cognitive, and behavioural disorders in children born very
preterm. Dev Med Child Neurol. 2003 Feb;45(2):97-103.
(15)Inclusion Ireland-The case for speech and language therapy by Pauline Conroy and Simon Noone.
Published September 2014.
(16) Source -Speak Easy Speech & Language Therapy, Caherslee, Tralee, Co. Kerry
(17) Source- The elbow room, 32 North Brunswick Street, Stoneybatter, Dublin 7, Ireland
(18) CATTS Ireland, 51 Delmere, Enfield, Co. Meath
(19)
http://med.stanford.edu/news_releases/2009/june/PTSD.htmlt (20) http://www.ncbi.nlm.nih.gov/pubmed/12685667
(21) Source APEX CLINIC Cork, Dublin and Wexford.
(22) Hodek at al “Measuring economic consequences of preterm birth, (2011), Methodical
recommendations for the evaluation of personel burden on children and their caregivers” published
by the National Institute of Health.
(23)Cristofalo EA, Schanler RJ, Blanco CL, Sullivan S, Trawoeger R, et al. (2013) Randomized trial of
exclusive human milk versus preterm formula diets in extremely premature infants. J Pediatr 163(6):
1592–1595. doi: 10.1016/j.jpeds.2013.07.011
(23)Lucas A, Cole TJ (1990) Breast milk and neonatal necrotising enterocolitis. Lancet 336: 1519–1523.
doi: 10.1016/0140-6736(90)93304-8
Acknowlegements:
The charity would like to thank all the
parents who participated in this report.
Your contribution will be of great benefit.
We would like to thank the families of our
three case studies who kindly offered to
share their experience for this report, Gwen
Husk, Ruth Kennedy and Anna Pohoska.
We would like to thank Orna Tunney,
Annalisa Riordain and Linda Good for
sharing photographs of their children.
Special thanks to our graphic designer
Matt Mallia for putting together the report.
A thank you to Danielle Baron for working
on the statistics.
To all the volunteers in the charity who
contributed their time to the report.
We would like to thank all the staff in the
neonatal units for working so hard helping
some of Ireland’s tiniest and sickest
babies, we are all so grateful for the work
you do.
Irish Premature Babies is an ethical funded
charity.
Address: Carmichael House,
North Brunswick Street,
Dublin 7
Phone: 01-8880882
Email: [email protected]
Website: www.irishprematurebabies.com
Twitter: irishprems
Facebook: irish premature babies
(CHY19532)