A conversation on the Facebook support group, regarding choice of surgeon and limits of insurance, had me thinking about when we first went to the RIAO. Nicks first orthopedic doc at NYU, Dr. Al Grant, suggested we see what Dr. Paley had to say. Its the only name he offered for a second opinion. He said every other doctor he knew would recommend amputation. Dr. Grant was in the middle regarding amputation versus lengthening and he warned us that Dr. Paley was “a bit of a cowboy”.
The night before our appointment in Baltimore Dr. Grant called to tell us he believed lengthening was the right choice for Nick. We realize he had just been at a conference with Dr. Paley and made his decision based on Paley’s information and experience. We counted that against Dr. Grant. He had said he could do the surgeries and could hold our hand through the whole process. He was really interested in treating Nick and I think he was being honest. Since he didn’t have as many lengthening patients. I think he realized that sending us to the RIAO for a second opinion meant there was a good chance we wouldn’t be coming back.
We met Dr. Standard at Nicks first RIAO visit. He spent a lot of time with us and we liked him right from the start. However we were there for Dr. Paley. He had been on Oprah for goodness sake! Anyone who knows me, knows I love Oprah (haha). By the time Paley left the RIAO a few years later, Nick was beyond established as Dr. Standards patient. That happened at the start due to his availability but in the end I am sure, was just as it was meant to be.
I have tried to consider what we would have done if the RIAO didn’t accept our insurance. I think at first we would have tried to get insurance that would have worked. As it was I avoided thinking about the money and didn’t research much about the cost of surgery. I just figured we would do it and deal with the consequences later. We ended up selling our home in Brooklyn and buying a much cheaper home in central pa, paying for a cobra plan and taking a year off work to care for Nick. Selling the house enabled us to do that and I know we were super lucky. In fact I felt like it was fate that we had bought my grandmothers house and then sold it to pay for Nicks care. I loved that tiny old house and the neighborhood it was in. I don’t know that I was totally honest when telling people why we were selling and moving but the truth is it was all for Nick.
The day before Nicks surgery we got word it was being canceled because we didn’t have insurance. I think because we changed to the cobra plan something was off. Once they realized that we had the cobra plan it was on but it was a few moments of crazy stress.
So in the end I haven’t answered my question as to what I would have done. Dr. Grant certainly knew FH. He was basing his, in the middle opinion, on the old adage of 3 toes lengthen, 2 or less amputate, which was already outdated by then according to the RIAO. I understand the logic. You need a certain amount of foot for the foot to be worth saving. The toes just aren’t the bones that determine success.
If we had chosen Dr. Grant we would certainly had not left NY. Fibular hemimelia put our lives on such a different course. I believed I was making the best decisions I could for Nick. It’s hard to imagine things any other way but back then it was us and Nick. Now with 3 more kids I think they would have factored in the decision too, had they been around. It would have been harder to pick up and move. Surgery complicates life so very much. Right now it’s all they know and I don’t think they’ve ever felt put aside for the sake of Nicks leg. I hope it stays that way.
In the end it’s not really possible to know what the right thing for another family is. Asking what if regarding our own past isn’t really relatable. My advice is usually to become as well educated on options as possible and then follow your instincts. Becoming well educated on options goes beyond just amputation versus lengthening.
Ten years later I can’t answer the “what if”. I can only be grateful to be where we are. Nick has a basketball game after school today. He wasn’t feeling great this morning but when I told him he had a game today he said, “My team needs me”, and got on with getting ready.