Jessica's Story
Jessica, Patricia and Neal's daughter was
born in July 1991 with macrodactly of the left pinky finger.
We all thought her finger was injured during birth. It looked swollen and stood
out at an angle. 
The pediatrician in the hospital didn't seem concerned, neither
did the family doctor. When Gene and I went to visit again in September, I
mentioned to Patty that Jessica's finger was still swollen and suggested that
she should see an orthopedic specialist.
On recommendation of the family pediatrician, Jessica was seen by an pediatric
orthopedic doctor in New York City. It became a nightmare for Patty and
Neal. They were told that her finger could keep on growing until it
reached the size of a baseball bat and that nothing could be done except
amputation of the finger.. They
were devastated. They began to search for a new doctor, one that was more
friendly and helpful.
A co-worker of Neal recommended them to the Shriners Hospital for
Crippled
Children in Philadelphia, PA. Off they went to see more
doctors.
Jessica's condition is a genetic disorder. There is abnormal nerve and
blood supply. The nerves in her
finger are as thick as a piece of uncooked spaghetti. The flesh keeps on
growing faster than the other fingers. Jessica has had surgery twice at Shriners
Hospital in Philadelphia to debulk the flesh from the finger. She
was under the care of her surgeon, Dr. Michael Thoder. She
still has full function of the finger and will have her final surgery when she
has her last growth spurt, approximately at 12 years of age. At that time they
plan to shave the bone tips in her finger to stop the bone growth.
She is now under the care of Dr. Kozin.
The
Shriner's Hospitals do not charge any fees for any of their services.. The
doctors and nurses are all volunteers. They were wonderful to both Jessica
and her parents.
On July 15,2002, Jessica went back to Shriner's Hospital to have the bones in
her finger shaved. They were going to do only the tip bone, but since her
finger is the same length as her mothers, they decided to do all three joint
bones. They also removed a small tumor on the palm of her hand. She
is recuperating from surgery.
For more information click on the links below.
