Circle of Hearts
Newsletter
Fall 2016
Greetings from the Circle of Hearts Board of Directors
After a long hiatus, we are very pleased to have the Circle of Hearts Newsletter restarted and available
for you, our cardiac families. We feel that with the addition of the newsletter, we can keep better
connected with our COH members, fellow “heart” families and newcomers. Some of our goals are: to
provide quality cardiac and health-related articles; highlights of recent Circle of Hearts events and
information on upcoming events & workshops; to have a section for the Heart Heroes Youth Group; a
“My Journey” feature story; and most importantly, an “Around the Circle” page spotlighting special
dates, birthdays, milestones, and anniversaries submitted by YOU. We also welcome any suggestions or
other submissions that would be beneficial to our readers.
As some of you may have noticed and wondered about, the Circle of Hearts did not host a Summer Picnic
this year. Due to a limited number of board members and all of their volunteer work that had gone into
previous events and initiatives this year, the Board decided to take the summer months off to rejuvenate
and be able to jump back into things with both feet come September. We already met as a group earlier
this month and with some brainstorming and careful planning, we have many things in store for the
heart kids and families in the upcoming months.
We hope you all had a great summer and enjoyed the many days of warmth and sunshine we had
available. Although the days are getting shorter and cooler now, along with it comes the picturesque
colors of Fall, cozy sweaters and the excitement of Halloween being just around the corner. We would
love to see your own little or big heart heroes all dressed up in their costumes, so we invite you to send
us a photo and short blurb that we can feature in our next issue of our newsletter.
Thank you to everyone who contributed to the contents of
this publication. We look forward to receiving further stories
and submissions for our future issues. They can be sent via
email to [email protected].
As Gord Downie poetically put it…
“It’s been a long time coming,
It’s well worth the wait”
In This Issue…
Page
Recent Events ...................................2-3
Upcoming Events ..............................3-4
Heart Heroes Youth Group .................. 4
Around the Circle................................. 5
Promotional Items for Sale.................. 5
Heart Education................................6-7
Ways to Give........................................ 8
Contact Us ........................................... 8
RECENT EVENTS
Family Heart Camp
The 13th annual Circle of Hearts Family Heart Camp took place this summer during the Canada Day long weekend,
from June 30th to July 3rd, at the gorgeous and ever-evolving Variety’s Camp Brereton, situated on Brereton Lake
in the Whiteshell. The Circle of Hearts camp was happy to host 52 guests this year, consisting of heart kids, their
parents, siblings, and even some grandparents. We welcomed a few new families who were attending Family
Heart Camp for the first time, as well as all new camp cooks, first aid attendant and camp grounds manager. We
got very lucky and had near perfect weather for the entirety of the weekend, which made it possible to fully enjoy
all that the outdoors had to offer. When not filling our bellies with the amazing food the cooks prepared for us,
families spent their time swimming and tanning at the beach, venturing out on the lake with the canoes and
kayaks, fishing, playing in the sports court, or just kicking back in the main lodge, conversing and building
friendships with the other cardiac families. Our most anticipated activity, which takes place every year thanks to
the local Brereton campers next door, every person at camp was treated to Sea-Doo, boat and pontoon rides out
on the lake. For the kids and parents alike, the smiles and excitement while speeding through the water was
immeasurable. Each evening as the sun would start setting on the mirrored horizon, families gathered at the heartshaped bonfire pit where the kids roasted marshmallows for s’mores while parents shared in appreciating the
precious moments together, knowing how far they had all come in their journeys.
“Heart Heroes” Youth Heart Camp
The annual Circle of Hearts Youth Heart Camp rolled into action the day after Family Heart Camp wrapped up,
going from July 4th to 8th. The 21 youth, ranging in age from 12-17 years old started their week by hopping on a
charter bus together and whisking off to Camp Brereton. Youth Camp was supervised by a group of outgoing
volunteer staff, consisting of both male and female camp councillors, a camp coordinator, first aid attendant, and
the two camp cooks. The youth had a blast all week, taking part in scheduled activities such as hiking, a canoe trip,
sandcastle competition, canvas painting, making dreamcatchers & crafts, and playing games in the sports court.
There was also plenty of free time for the youth to hang out together, doing such things as swimming down at the
beach or cruising around the cove in the kayaks and canoes. Some mornings the boys’ cabin group would even
wake up extra early to go fishing off the point. Like Family Camp, the youth were treated to Sea-Doo rides out on
the lake by the local campers and lots of fun and laughs were had by all. Evenings were often spent rather in the
main lodge enjoying movie nights or down at the bonfire with treats provided by the cooks. After the five funfilled days came to an end, the sun-kissed campers loaded their gear back up in the charter bus and said their
farewells to camp for another year. For those youth who are now aging out of the Heart Heroes Youth Group,
instead of being sad that they may no longer be campers, they are excited to return next year, volunteering as
camp councillors themselves!
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The utmost shows of appreciation to Variety, the Children’s Charity of Manitoba for
providing Camp Brereton free of charge to the Circle of Hearts since 2004, and to the
Goldeyes Field of Dreams Foundation for sponsoring this year’s Youth Heart Camp!
Many thanks also to all of our volunteers who, because of their hard work and
dedication, made these two camps possible. They were: COH’s Camp Coordinators,
Cheryl Janz & Joni Wilson; COH’s Treasurer, Gil Meilleur; First Aid Attendant, Chelsea Wall;
Camp Councillors, Anita Sutherland, Gillian Inhoff, Graham Boomer-Enns, Hailey Rannie,
Justin Fehr, Karen Myran, Malcolm Sanderson, Sean Knox, & Stephanie Fehr; Lifeguards,
Daniel Sullivan & Monica Chorney, Camp Cooks, Evan Eyolfson & Jill Murdock; and last but
not least, the local Brereton camping group who have been taking our heart kids and families
out boating every summer since 2005. Our gratitude to you all!
Many thanks goes out to the Winnipeg Blue Bombers for donating 30 game tickets to
the Circle of Hearts, allowing 15 heart kids and a guest to attend a Bomber game this
summer! A great time was had by all!
UPCOMING EVENTS & WORKSHOPS
Coffee (Support) Groups
Caring for your child with congenital or acquired heart disease (CHD) can be extremely stressful. A new diagnosis
brings many questions and feelings of uncertainty, equally, issues that may suddenly arise or be ongoing with older
heart children. You are not alone. We believe that it is of great benefit to communicate with fellow cardiac families
who have gone through similar situations. It can help prepare your family for some of the situations and feelings
that you may experience. We aim to provide emotional and educational support to those who are in need, as well
as a means of networking among families whose children are affected by heart disease.
The Circle of Hearts has been offering monthly Support Group Meetings at the Children’s Hospital’s Ronald
McDonald Family Room over the past year, however, we will now be trying something new and offering a monthly
“Coffee Group”, where heart parents can meet informally over coffee and have the opportunity to talk with fellow
CHD families. Coffee Groups will take place at local Smitty’s restaurants throughout Winnipeg, with locations
circulating each month between the 4 ends of the city, to provide more accessibility to all families. Pre-registration
is not necessary. Meetings will take place the 2nd Thursday of each month from 7:00-9:00pm, and are open to all
pediatric CHD families/caregivers. Coffee, tea, juice and/or soft drinks will be covered by the Circle of Hearts.
The next scheduled Coffee Groups are:
Thurs, Oct. 13th, 7:00-9:00 pm
Smitty’s restaurant, 1017 St. James St.
Polo Park Area
Thurs, Nov. 10th, 7:00-9:00 pm
Smitty’s restaurant, 8-2305 McPhillips St.
Garden City Area
Thurs, Dec. 8th, 7:00-9:00 pm
Smitty’s restaurant, 1512 Regent Ave.
Transcona Area
Thurs, Jan 12th, 7:00-9:00 pm
Smitty’s restaurant, Unit A – 150 Meadowood Dr.
St. Vital Area
CPR/First Aid Training
The Circle of Hearts will be offering a Level C – CPR/First Aid/AED training day on Saturday, November 5th at
St. John’s Ambulance, from 8:30am to 4:30pm. This event is to provide vital life-saving training for parents,
siblings and caregivers of our heart kids. Cost has been reduced to half price of just $45 for the heart kids and their
immediate family/caregivers, with the Circle of Hearts covering the remainder. Pizza lunch will be provided. Space
is limited, so please RSVP ASAP at [email protected]. Payment is due via cheque or cash to hold your
spot – no refunds upon cancellation or no-shows.
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Annual Christmas Party – Breakfast with Santa
Our 16th Annual Christmas Party will be held on Sunday, December 11th, 9:00
am until 12:00 noon, at the Clarion Hotel, 1445 Portage Ave. This event is open
to all children of the Variety Children Heart Centre and their immediate family
members. Breakfast will be served, entertainment provided, as well as a special
visit by the big man himself, Santa!! Registration will be taken via email at
[email protected] until Dec 1st. When RSVP’ing, please indicate the
number of adults and the names/ages/gender of all children attending.
At the Christmas party, we will again be accepting monetary donations towards our “Pay it Forward” Christmas
Hamper. Our Christmas hampers are provided to one or more fellow cardiac families who are unfortunately inhospital during the Christmas season, or going through a very difficult time medically. Recipient families are
chosen in confidence by the staff of the Variety Children’s Heart Centre.
HEART HEROES YOUTH GROUP
In 2004, a young lady named Jody Jeffrey had contacted the Circle of Hearts, offering to form the beginnings of a
cardiac-related youth group. Growing up with congenital heart disease herself, Jody’s goals were to provide
guidance and supports to youth who may be facing the same questions, struggles, and uncertainties that she had
while growing up with CHD. With the assistance of the Circle of Hearts Board and the staff of the Variety Children’s
Heart Centre, Jody’s dream became reality with the creation of the Youth Heart Group. CHD youth between the
ages of 10-17 years old met periodically, having support meetings and question & answer periods with Jody at the
Variety Heart Centre, while parents met next door for regular support meetings. Months later, with the help of a
heart parent, Annette Massey, the Youth Group expanded their goals and started planning and going on outings
together, to have a little fun outside of the hospital setting. Sadly, Jody passed away in 2009 due to complications
with her heart. Although Jody’s big smile and warm personality have been greatly missed over the years, her
memory continues to live on through her beloved Heart Heroes Youth Group.
The Heart Heroes Youth Group continues on to this day, open to all CHD youth, ages 12-17. This past summer,
some of the youth attended Youth Heart Camp, with highlights shown on page 2 of the newsletter. Although the
support meetings for the Youth Group were phased out over the years, the Circle of Hearts Board is planning for
some upcoming workshops geared towards youth-aged topics, such as Self-Care. We are always open to new ideas
and suggestions from our youth and families as well, so please feel free to pass those on to us!
An annual Transitioning Workshop, hosted by Adult CHD Cardiologist Dr. Tam, normally takes place each Spring
for the older youth who are transition out of the Variety Children’s Heart Centre, however, due to a busy schedule,
Dr. Tam was unavailable this year. The next Transitioning Workshop will take place in Spring 2017.
Our next Heart Heroes Youth Group event will be a Halloween Movie Night…
“Boo! A Madea Halloween”
Saturday, October 22nd, 2016
Evening showing – Time to be determined closer to date
Cineplex Odeon Theatre McGillivray
2190 McGillivray Blvd, Winnipeg
FREE for Heart Heroes Youth (Includes movie ticket, drink & popcorn)
Guests are responsible for their own movie ticket and additional costs
Please RSVP to [email protected]
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 AROUND
THE
CIRCLE 
Birthday Announcements
October 20th – Emma Anderson is turning 9!
November 26th – Payton Lang is turning 13!
December 13th – Maky Tochez is turning 14!
In Memory
A very sad and unexpected farewell to a beloved friend of the Circle of Hearts,
Jerry Maslowsky, who served as CEO of Variety, the Children’s Charity of
Manitoba. Jerry’s outgoing personality, kind heart and boisterous enthusiasm will
be greatly missed by his family, friends, colleagues, the many families he got to
know and help over the years, and the Circle of Hearts Board to whom he provided
much guidance, wisdom and friendship to.
From all our hearts to yours Mr. Maslowsky.
We would love to receive more submissions from YOU, THE CHD FAMILIES, for our “Around the Circle” section of the
newsletters. Submissions may include your heart heroes’ upcoming birthdays, special milestones, updates on health status,
memorials, or anything you’d like to share with your fellow cardiac families. We are also looking for 1-2 page long
“My Journey” stories, spotlighting one of our CHD children in each of our future issues. All submissions can be sent via email
to [email protected].
Did you know…
The Circle of Hearts has 2 FREE Parking Passes available at the Variety Children’s Heart Centre for heart families who are
admitted to the Children’s Hospital. Please inquire with VCHC staff, should you ever need to utilize a pass.
PROMOTIONAL ITEMS FOR SALE
Push-action Ballpoint Pen (blue ink)
Red and black body, with the Circle of Hearts logo in white
$2.00 each or 12 for $20 (no taxes charged)
Large, Durable Drawstring Knapsack
17”w. x 20”h. in red with the Circle of Hearts logo in white
$7.00 each (no taxes charged)
16-ounce Travel Mug
Double-walled stainless steel with safety lid and slide-action opening. White band with
a red/blue Circle of Hearts logo.
$15.00 each (no taxes charged)
To place an order, please contact Gil Meilleur at [email protected] or [email protected]
Payment can be made by cash or cheque.
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HEART EDUCATION
Supporting Development in Children with Congenital Heart Disease
(Article courtesy of http://circ.ahajournals.org/content/130/20/e175)
Children with congenital heart disease (CHD) are exceptionally resilient. After extensive surgeries and
hospitalizations, they typically go on to live full, meaningful lives. However, some children with CHD experience
developmental and learning differences and benefit from extra help to succeed in school, social relationships, and
future employment.
Why Are Children with CHD at Higher Risk for Developmental Differences?
CHD can result in changes to blood flow to the brain before and after birth, and this might affect brain
development. Studies have found that the brains of children with some forms of CHD are less mature at birth.
Children who have long hospital stays or other complications (premature birth or genetic/neurologic conditions)
are also at risk. Studies are underway to better understand why children with CHD are at risk and how these risks
can be decreased.
Does My Child Need Neurodevelopmental Follow-Up?
Children typically do best when developmental delays and learning differences are identified and addressed early;
however, it is never too late for evaluation or intervention. For children with complex CHD (those requiring openheart surgery during infancy) or other risk factors or complications, the American Heart Association and the
American Academy of Pediatrics recommend routine neurodevelopmental assessment as an essential part of
cardiac care. Assessment should also be provided for any child with CHD and developmental concerns. You know
your child best; trust your instincts and talk with your doctors and teachers if you think your child is not developing
important skills. Ask your cardiac team about a cardiac neurodevelopment program (or a general
neurodevelopment program, if a cardiac-specific program is not available), which may be located within the
hospital where your child had heart surgery.
What Should I Watch For?
Concerns can arise at different developmental stages. See the Table for milestones and possible concerns. Infancy
is a time of rapid growth. In preschool, children build independence and become great learners. Schoolage/adolescent children are building an academic and social foundation for adulthood. Even children who have
had no problems before may begin to struggle as demands increase over time. Ongoing reassessment is needed
to identify and support changing needs.
What Can I Expect From a Neurodevelopmental Assessment?
Assessments provide a snapshot of a child’s strengths and weaknesses in comparison with other children the same
age. Repeated assessment helps to track change/improvements over time. For infants/toddlers, the assessment
consists of play and structured games. For older children, it includes activities that resemble schoolwork. Parents
and teachers may be asked to fill out questionnaires about learning and behavior. Recommendations are then
made to support child development. For example, in young children, every state has an early intervention program
that provides therapies (e.g., speech or physical therapy) to help children meet their full potential. In older
children/adolescents, therapies and academic supports can be provided in the school and outpatient community.
Your Role as a Parent
Families often say that children with CHD are evidence of miracles. As the family member of a child with CHD, you
have already helped your child succeed by providing support, encouragement, and important resources. Regular
neurodevelopmental assessment is an important part of care for children with CHD that will help your child
continue to thrive.
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Table
Milestones and Possible Problems by Developmental Stage
Age
Important Milestones
Possible Concerns
0–6 mo
Head control, rolling over, reaching toward
objects with both hands
Cooing, laughing, smiling
Developing sleep/eating patterns
Dislike being on stomach, weak/overly tense muscles,
using only 1 hand/side of body, trouble turning head
Not vocalizing or responding to caregivers
Difficulty calming and developing routines
6–12 mo
Sitting up, supporting weight on feet,
grabbing objects
Babbling, recognizing caregivers
Muscle weakness/tightness, not picking up small things
Difficulty learning to chew/make sounds, no back-andforth play, hearing/vision problems
1–2 y
Walking, eating with hands
Speaking single words, following simple
directions
Preferring certain people, sleeping through
the night, eating solid foods
Slow to walk
Not speaking words or gesturing
Difficulty eating solid foods, sleep problems, extreme fear
of new situations or people
2–3 y
Running, jumping, stacking blocks, eating
with fork/spoon
Understanding most words, speaking 2word phrases, pretend play
Poor coordination
Trouble understanding, unclear speech, single words only,
extreme or frequent tantrums
4–5 y
Increased independence with self-care
skills, better coordination
Speaks in full sentences
Playing with other children, learning social
rules, basic understanding of feelings
Showing school readiness
Problems tying shoes, buttoning, snapping, or zipping,
poor coordination
Problems communicating or speaking clearly
Trouble making friends, playing well with peers,
participating in group settings
Problems learning letters/numbers, holding pencil, cutting,
short attention span, overly active
Kindergarten to
3rd grade
Learning basic academic skills, keeping up
with school work
Forming friendships
Trouble with math facts, sounding out words, spelling, or
handwriting, inattentive, trouble with multistep directions
Trouble making/keeping friends, misunderstand social
rules and other’s feelings
Later
elementary/middle
school
Applying basic academic skills, keeping up
with pace of learning, increased
organization and independence
Tolerating frustration and changes,
managing emotions
Reading subtle social cues, having good
friendships
Trouble understanding what is read, slow/messy
handwriting, slow keyboarding, puts off homework/takes
much longer than peers to finish, forgetful/disorganized,
makes careless errors
Moody/worries, strong reaction to frustration
No best friends, trouble relating to others, overly selfconscious about looks or grades
Teenage years to
young adulthood
Knowing needs and communicating them
to teachers/employers
Completing school/job tasks and pursuing
goals independently
Actively participating in medical care,
taking medicine with parent support
(or independently)
Engaging in good health habits
Responsible/accountable, good behavioral
control
Not asking for help or self-advocating
Lack of initiation, parents need to help with goals, provide
transportation
Needing high level of support for medical care, forgetting
to take medications, not understanding medical diagnosis
Poor diet, limited exercise (despite encouragement and
lack of restrictions)
Engaging in risky behaviors, decreased participation in
typical activities (driving, getting a job), withdrawn
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WAYS TO GIVE
Volunteering
The Circle of Hearts is a nonprofit group run entirely by volunteers. It would be impossible to run our events
without their help. Time can be just as valuable as money, and we are always in need of an extra helping hand. By
volunteering, you donate your time and skills as well as having the opportunity to build your social circles while
reaping the physical, mental and spiritual benefits from the labor you contribute to your favorite cause. Whether
volunteering for you means helping at one of our events, joining the Board, or if perhaps you own a business and
would like to offer your services, the Circle of Hearts would welcome your help gratefully!
Donating
Most people support a charity that means something to them personally. If you or a loved one have been affected
by Congenital Heart Disease, consider taking a few moments to support our charity. The Circle of Hearts Family
Support Network is a registered non-profit children’s charity representing all pediatric heart patients and families
of the Variety Children’s Heart Center, who span over Manitoba, Nunavut and parts of NW Ontario and Eastern
Saskatchewan. There are approximately 3500 children who are seen at the Children’s Heart Center every year,
ranging from prenatal to 17-year-old patients who are transitioning to adult cardiology, thus, our Family Support
Network was created to assist as many of these families as possible – however and where-ever needed. All work
and positions of the Circle of Hearts are performed on a volunteer basis, therefore nearly all funds raised and
received go directly towards providing supports, events, education, workshops, and resources to our CHD families,
with a minimal cost towards administration expenses.
Donating to Circle of Hearts is easy. Donations can be made online at www.circleofhearts.ca, by contacting COH’s
Treasurer by email at [email protected], or by cash/cheque mailed to:
Circle of Hearts Family Support Network
C/o Variety Children’s Heart Centre
FE241-685 William Ave.
Winnipeg, MB R3E 0Z2
Official tax receipts will be issued for donations $20 and over. Registered Charity Number: 87416-9015-RR0001
CONTACT US
Email: [email protected]
Website: www.circleofhearts.ca
Facebook page: www.facebook.com/groups/circleofhearts/
Address: FE 241-685 William Ave., Winnipeg, MB R3E 0Z2
Phone: (204) 688-0418
Fax: (204) 787-2004
Board of Directors:
President – Joni Wilson
Vice-president – Cheryl Janz
Secretary – Amy Saunders
Treasurer – Gil Meilleur
Youth Program Coordinator – Violeta Tochez
Member at Large – Elizabeth Dasari
Western Canada Children’s Heart Network Representatives – Joni Wilson & Cheryl Janz
Circle of Hearts Registration:
If you would like to be on our mailing list, receiving future newsletter and invitations to our events & workshops
throughout the year, please contact us by email to request a registration form.
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