Name:  Debbie (mother) and Hannah (daughter)

Child:  Hannah, 9 1/2 years old

City and state:  Dothan, Alabama  


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.

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