Imagine that during your entire pregnancy you hoped, prayed and almost sold your soul for your child to be a candidate for 'correction', reconstruction, normalcy. You wished for the most mildest case. You wanted the 'un-clear-cut' situation where you could make a 'choice'. Where you could lengthen the leg, save the foot, restore normalcy.
I read the literature, I knew what the different types of FH were, I looked at x-rays and real examples of people with this disorder.
When Madeleine came out of me and I saw her perfect 5 toed foot and I felt a victorious sigh of relief. I was so sure that we would lengthen. I couldn't imagine cutting off that foot.
For the first time ever I requested my daughter's chart. I read all the medical charts, paperwork, radiology reports, physical therapy reports, and the surgical report. I read the impressions from the doctors, their take on our conversations. I read that Dr. Mosca wrote that Madeleine's condition was 100% correctable. I read that he discussed lengthening with us and that Madeleine was a candidate. I figured out that what I had hoped for had come true.
I wanted Madeleine's condition to be treatable. What I failed to realize is that her condition was treatable and that although she was a candidate for lengthening she was a better candidate for amputation. Amputation is a form of medical treatment for a child with fibular hemimelia, it is not failure and it was not our last option.
Today I took Madeleine to see another doctor. We called it a second opinion even though this doctor had actually been our first opinion. I made an appointment to see Dr. Saliman even though I knew that we had gone to the best doctor at Children's Hospital, Dr. V Mosca. I wanted to hear Dr. Saliman say that she would have told us to amputate. I wanted her to look at Madeleine and say that she was the best that she could be. I wanted to tell her how thankful I was for her first opinion.
Michael and I saw Dr. Saliman at Swedish Hospital when I was pregnant. I delivered at Swedish, as do many families in the Seattle area, and had my level II ultrasound there. We saw Dr. S after our ultrasound when the radiologists could not tell us what was going on with our unborn daughter. We were scared, sad, raw. She was pleasant, reassuring and helpful. We have always held her in the highest regard for the way that she reassured us that Madeleine would be fine. She told us that termination was not something you did for FH. She made it 'normal' when everyone else in the medical field had no idea what it was. In some ways she saved Madeleine's life.
Dr. S saw Madeleine when she was a brand new baby. She did her first x-rays and was the first to tell us that even though Madeleine's leg looked okay there was a lot going on in there.
Madeleine was treated at Children's hospital because it is Children's Hospital and because Dr. Mosca could basically do a Syme's amputation in his sleep.
The first thing that Dr. S said to me was that she was happy to read that we made the decision we did. She was happy that we decided to amputate and that that was definitely the treatment she would have recommended as well. She told me that if Madeleine had been her daughter she would have amputated as well.
That is what I was hoping to hear.
Imagine second guessing your decision to amputate!
She made a lot of good points that I had not heard from Dr. Mosca. She said that lengthening is problematic for some kids with FH for a few different reasons:
1. multiple surgeries. She agreed with Dr. M that Madeleine would have had to have 2 or more lengthenings with multiple reconstructions.
2. difficulty stretching nerves. She said that sometimes the most painful process is stretching the nerves since there is heightened sensitivity and spasm-y pain.
3. loss of time, movement, activity with one's peers. She said that Madeleine will have more normal activity, strength etc. because she is doing all those things now. She isn't limited by the prosthesis and is able to climb, swim, run and tumble. And there is no pain.
She also shed some light on Madeleine's case, some of which was illuminating some of the surgical report that I had not heard from Dr. M:
1. There was absolutely no bony fibula present.
2. There was a weakened blood vessel down the front of her leg that could have caused a lot of trouble in lengthen in that it may have been difficult to get blood to the lower part of the limb.
2. There was a bundle of atrophied nerves in her leg/foot that would have been problematic in lengthening.
3. She was an excellent candidate for a syme's amputation, which, in her opinion, was done very successfully.
4. There is very little chance that the heal pad would migrate or that she would ever need another amputation surgery.
5. She would have done exactly the same thing was Dr. Mosca.