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S. Daytona toddler endures procedures to
grow fingers
By Lacey McLaughlin
STAFF WRITER
Published: Monday, June 3, 2013 at 5:30 a.m.
Troy Pandelos hopes to teach his son, Jason
"Little Troy" Pandelos how to tie knots when
they go sailing together.
Sarah Pandelos wants her son to be able to play
the guitar he looks at with growing curiosity.
But most of all the parents want their child not
to feel limited by the four missing digits on his
right hand.
The South Daytona parents hope that a medical
procedure that grows new fingers using bones
from their son's feet will reverse nature's
course. As Little Troy celebrates his second
News-Journal/STEVEN NOTARAS
Sarah and Troy Pandelos of South Daytona
enjoy some time at play with their son Jason
“Little Troy,” who turns 2 next month. Jason,
who was born with a deformed right hand, has
been undergoing a multi-step medical
procedure that grows fingers using bones from
his toes.
birthday next month, he will be one step closer to eating his cake with two hands.
Little Troy was born with symbrachydactyly — missing fingers or a missing hand. In
Little Troy's case, a congenital disorder in his mother's womb, called amniotic
banding, restricted blood flow to his developing hand and it was unable to form
properly.
Because missing digits are difficult to detect through sonograms, Little Troy's
deformity wasn't discovered until moments after his birth.
"When the doctors put him on my chest his hand was the first thing I noticed,"
Sarah, 41, said. "As a mother your first thought is 'What did I do?' "
The grim discovery left the parents worried for their baby's future.
Doctors told the couple there was little that could be done to change the appearance
or function of what the parent's called Little Troy's "Lucky Fin."
But after discovering an article about Dr. William Seitz, a doctor in Ohio who
pioneered a surgery to grow new fingers for children, the Pandelos scheduled a
consultation at the Cleveland Clinic in Ohio.
"We drove to Ohio just to learn more about it," Sarah said. "We didn't even know if it
was something we wanted to do but we were so happy to learn that there was
another option out there."
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Bone lengthening procedures have been performed for nearly half a century but it's
only been in the last few decades that doctors have used the procedure for upper
extremities.
Seitz has performed the procedure he calls callotasis more than 400 times in the last
two decades. The multi-step process involves surgery to create webs in the hand for
fingers and to remove part of the bone from the patient's toe and implant it into the
hand. After the bones adjust to the hand, metal lengtheners are inserted into the new
bones for several months; the new bones can grow up to a rate of 1 millimeter per
day.
The Pandelos said the decision to embark on such a complex and strenuous journey
for their son was difficult. That decision was made easier, however, when the family
learned that the procedure was covered by their private insurance.
"We decided that if it can help him or give him an advantage in life, then it's our
responsibility as parents to help him," Sarah said.
Little Troy has now had five surgeries and will require at least two more before the
four fingers are fully formed.
Because Seitz removed growth plates from two of Troy Jr.'s toes, those bones will
continue to grow as the boy gets older. Those toes will be shorter than the others but
should not impair Little Troy's ability to walk or run, his parents said.
Six months after the bone implant, Little Troy had another surgery to attach metal
lengtheners to his new bones. The lengtheners were attached to the bones in his
hand with a pin and had to be turned four times a day with a key for the bones to
grow.
While the lengtheners did not seem to hurt their son, the Pandelos disinfected the
device several times a day and avoided beach trips to prevent infections. The
infection rate while wearing the lengtheners is 46 percent, according to a 2010 study
Seitz published about the procedure in the Journal of Bone and Joint Surgery.
Protecting their active toddler from interfering with the external contraption proved
more difficult. On his first birthday, Little Troy tore a lengthener from his hand after
getting it caught in his crib. The incident required an emergency trip to Ohio for
repair.
When Seitz removed the lengtheners three months later, the Pandelos were relieved
to see their son's progress. The new bones grew by about an inch. It's that same
progress that has given other parents hope. In the 2010 study, 139 out of 141 parents
who had selected the procedure for their child said they would go through it again.
While the new fingers may still appear abnormal after the procedure, many children
gain better motor function, the study reports.
Dr. Raymond Woo, medical director of Pediatric Orthopedic Surgery at Florida
Hospital for Children, said many children born without fingers or hands learn to
adapt and can still lead full and active lives. He said that parents should carefully
consider how far to intervene when it comes to repairing deformities.
"My advice is to wait until the child is old enough to get an X-ray done and have their
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bone structure studied," he said. "Then discuss what's best for your child's wellbeing. After all is said and done, is it worth a multitude of surgeries for a hand that
might be marginally better?"
Little Troy can now pick up toys with his right hand and grab onto the rope leading
up to his playhouse. But he will require another set of surgeries this fall to lengthen
the bones further.
"Even if this just helps his self-esteem, that's OK," Troy, 37, said. "If he can play Tball with the rest of the kids, maybe they won't make fun of him because of his hand.
Who knows what he'll be able to do in five to 10 years?"
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