When our daughter was two and a half her babysitter felt a bump in her leg. Her pediatrician took an X-ray and left us a voicemail saying our daughter had a rare disease and left the names of a pediatric orthopedist and a geneticist. The pediatric orthopedist told us very genially that our daughter has the most common of rare childhood diseases, Multiple Hereditary Exostoses (MHE) and instructed us to ignore it and enjoy her childhood.
My husband did not ignore it and found a rare disease conference at Sanford Burnham Research Institute that was focusing in part on MHE. It was at this conference that we met Dr. Feldman. Thursday was the day all the scientists and doctors shared their research. It was very technical and there was a lot I didn’t understand but I understood Dr. Feldman when he said “When other doctors tell you your children with MHE will have to get use to living in pain, I say BULL***T.”
Friday at this conference was for the families and Dr. Feldman said he would be happy to do a brief examination of our children if we wanted. He felt my daughter’s left arm for 2 seconds and told me her left ulna was bowed out and to send him her X-rays. We had recently spent an entire day having her bones measured, many X-rays and a full body MRI and no one told us her left ulna was bowed. Then during that summer she twisted her left ankle playing laser tag and it began to hurt her. We went back to her orthopedist, they took X-rays and said nothing was wrong. Amanda had been taking ballet since she was three and never had any pain and now her ankle pain would not go away. They gave her an orthopedic ankle brace, we went to weekly physical therapy… nothing helped. That fall we finally got Amanda’s X-rays to Dr. Feldman and he told us her left ulna was even more bowed than in February and if it continued her elbow joint would pop out. But if they straightened it out with a small titanium rod the elbow goes back in place, a procedure he invented. Here is Dr. Feldman’s much more eloquent description of this surgery.
He also inserted a screw in her ankle which helped stabilize her and once her ankle healed she was pain free. She is now dancing again.
What Dr. Feldman taught us and what we experienced first hand was that most orthopedic surgeons wait until there is pain before they intervene. In less than a year Amanda’s bowed ulna went from 13% to 19%. Dr. Feldman has seen so many cases of MHE that he knows how the disease will progress so his practice is founded on prevention.
MHE is a terrible disease. That said, I feel incredibly fortunate we found Dr. Feldman and The Paley Institute. The entire team is the BEST. Their physical therapy is amazing. The woman who made my daughters splint was an artist. When we had her splint removed in LA everyone in the office oohed and ahed over her splint. As a parent of a child with MHE you can never stop worrying when and if there will be another surgery. As a patient of Dr. Feldman though, you will never have to wonder if there is a better surgeon or a better orthopedic practice. You are at the best in the world.
