Rachel had her appointment at Shriner's this morning. We were very impressed with Shriner's - kid-friendly everything, toys mounted to the walls in every exam room, cute decorations and characters everywhere, and very patient low-key doctors and nurses. It was a great place!
Rachel had more x-rays, photos taken of her and her hand, an occupational therapy evaluation, and a consultation with the hand specialist. She now has an official diagnosis. Her hand condition is called symbrachydactyly (sim-brae-key-dak-til-lee) and is a rare birth defect. It is not genetic (she can't pass it on to her children) and has no other associated illnesses or defects. The cause is unknown, just that at some point during the second month of fetal development something interrupted the blood flow to the "limb bud" that would some day be her left arm. Her arm and wrist appear to be entirely normal, she just doesn't have a hand or finger bones. Although I have long known from my own internet research that Rachel has symbrachydactyly, it's nice to have an official medical diagnosis.
The surgeon we met with, Dr. Goldfarb, got down on the floor to play with Rachel and sat with us until we had all of our questions answered! He knew we had been referred to Shriner's to investigate a toe transplant, but he is not recommending this surgery. He feels that the risks of surgery don't justify the limited finger function that Rachel might gain. She would lose two toes on one foot and perhaps gain some use of the "fingers", but not a pincer grasp and no real dexterity.
So, our decision was easy. Rachel will live with the same little hand that she was born with. We won't be cutting her perfect little feet or putting her through a grueling surgery and long recovery. She is wonderful just the way she is. In many ways, it's a big relief for us. Now we just need to find ways to adapt things for her, but we kind of like that sort of problem solving. We're glad we went to St. Louis and we're really glad we're home!