Initial Consultations

Other than her hand, my daughter appeared perfectly healthy and we were able to go home from the hospital within the normal 48 hour time period. Our pediatrician referred us to a pediatric orthopedic surgeon in Omaha who was able to see us when she was about 4 weeks old. This is usually the standard process as directed by most managed care providers:

"The era of managed care has changed the patterns of referral of children with limb anomalies. Frequently, the child is referred directly to the orthopaedic surgeon by the pediatrician."

The orthopedic wasn't familiar with her condition either although he was able to recommend some specialists including Dr. Paul Manske in St. Louis.

By the time we met with this orthopedic we had done enough research to know that limb differences can also be a symptom of other conditions such as kidney and cardiovascular problems. Our pediatrician did not tell us this. So in addition to consulting with orthopedic we were also able to get an x-ray and ultrasound that confirmed that her skeletal structure and organs were functioning normally. The orthopedic diagnosed the condition as Amniotic Band Syndrome.

Through our friends we had also been given the name of a hand surgeon in Omaha who had some experience with congenital hand conditions. We saw him the same week as the orthopedic. He diagnosed it as a form of atypical cleft hand. He was also the first doctor we saw to use the term "failure to form" when we asked what we should tell others what the condition is. He told us that initially he thought my daughter's hand was likely to be relatively functional because the pinky and thumb were largely intact and that she was able to form a pincher grip. He asked to see us again in 6 to 8 months.

Both doctors said it was too early to get a usable x-ray of her hand. Both also reinforced what they emphasized as the most important point -- that as parents we were calm about the situation and that we needed to make sure we were enjoying our daughter just like we would any normal newborn.