A narrative account of Will's health problems

Summer 1997 to Spring 1998

In the summer of 1997, our family moved to North Carolina.  This meant that Will would receive his specialty care at Duke University Medical Center (although he would still return to Boston for annual cardiac care).  This proved to be a wonderful arrangement as Will's cardiologist at Duke had worked with many of Will's care providers in Boston.

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In October of 1997 our family grew with the arrival of our son Andrew.  Like his brother, Andrew began his life in the neonatal ICU.  However, unlike big brother, he did not have any serious medical problems and quickly came home.  Clearly, this pregnancy was not entered into lightly and was characterized by great worry on our part.  It lacked the naive optimism of our first pregnancy.  However, the end result was every bit as joyful.

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In January 1998, Will underwent left femoral osteotomy surgery at Duke University Medical Center.  This resulted in Will being in a body cast for the next six weeks.  A metal bracket was placed on his femur that would have to be surgically removed in one year.

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Will proved to be very resourceful in dealing with the body cast.  He learned to crawl, pull himself up on furniture, and to fall off furniture while wearing the cast.  After the cast was removed, he was whisked home for a much needed, prolonged soak in the tub.  He was walking within two weeks (although the smell of the cast seemed to linger for another week after that!).

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Approximately one week after the removal of the cast, Will suffered a disruption in the circulation in his left leg.  His leg became cool, dusky, painful, and had faint pulses.  He was taken to Duke University Medical Center where the condition improved.  There was no clear determination about the cause of the problem.

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As with the craniosynostosis repair, we agonized over the decision to have the orthopedic surgery.  It was horrifying to us to consider subjecting Will to further surgery.  However, much like the cranial surgery, the orthopedic surgery was a tremendous success and resulted in rapid improvement in his coordination and mobility.


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