Name: Debbie (mother) and Hannah (daughter)
Child:
Hannah, 9 1/2 years old
City and state: Dothan,
Alabama
Email: german@snowhill.com
Areas of involvement of melorheostosis: Deformities thus far have only been in her left hand/wrist. Her pointer finger is pulling into the thumb. She is unable to bend her wrist, nor can she rotate the wrist. Hot spots are in both arms up to her shoulders and both legs.
Personal History:
I knew that Hannah's left
hand looked different at birth. No doctors or other family members noticed
anything wrong with it. Though I was considered a frantic
first time mother, I was sent to a hand specialist in Dothan. The doctor
(Dr. Feagan) told me that less than one in a million babies are born with tumors
in the hand and for us to come back in six months. When we went back he
said that it was definitely a tumor and for us to just wait to see what it would
do. We did not like his attitude and he did not want to refer us to another
doctor. I finally took her to the Children's Hospital in Birmingham to Dr.
John T. Killian. Exploratory surgery was done and an intern diagnosed it
as Melorheostosis. Dr. Killian later performed a tendon release and
deformity has since reoccurred. He discouraged anything that I did to
learn more about the disease. He was wanted to do a third surgery on her
hand and I had learned enough to know that surgery should be put off as long as
possible! After paying someone to do a medical search off the
internet, I found the name of a recommended Pediatric Bone Doctor in Atlanta,
Georgia. Dr. Raymond T. Morissee. He is super!! He encourages
my interest in finding out all that I could, stating that we would be a both a
better patient and Mom because we would have a better understanding of the
disease. He referred us to an older doctor that had seen this disease in
another patient; Dr. Louie Bayne, at Scottish Rite also in Atlanta,
Georgia. He uses great caution when talking about another surgery. He
thinks that if we do surgery on the hand right now, she had a chance of
losing total use of it.
Other comments:
Both Hannah and I are excited about sharing information and experiences with others. She recently found out that there was another child her age that also has Melorheostosis. She stated that she thought she was the only kid that God had done this to and actually was happy to know it! Maybe, together we can all be a support to one another and encourage doctors to do more research on Melorheostosis.