A narrative account of Will's health problems

Boston: August 1996

Given Will's miraculous recovery in Boston, it was unanimously recommended that he should undergo craniosynostosis repair and receive follow-up care for his heart and kidney at Children's Hospital.  Will continued to receive specialty care at the hospital where he spent 16 of the first 18 months of his life.  We were never informed of reasons why this hospital and the hospital in Boston chose such difference treatment courses with such discrepant outcomes.  Although we were not aware of it at the time, we eventually learned that "the hospital" discontinued its pediatric cardiac surgery program around the same time that Will was transferred to Boston.  We were not officially informed as to the reasoning behind this decision.


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We returned to Boston in August, 1996 for three weeks of treatment and assessment.  During this time, Will's heart and kidney functioning were reassessed and he underwent successful surgery to repair his craniosynostosis.  The decision to have the cranial surgery was agonizing for us.  Unlike his heart surgeries, the cranial surgery was not an immediate life and death issue.  However, the consequence of not having the surgery was that Will may have a malformed face and head.  We struggled with the idea of subjecting Will to the pain and risks of yet another surgery.  We made our decision after a close friend confided that their two-year old daughter noticed that Will's head looked different.  We recognized that Will would have to struggle all his life with being different because of his medical problems and we felt that the cranial repair would help to minimize some of these differences.


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Like all of his other treatments at Children's Hospital, Will sailed through the surgery with minimal complications.  He spent three days with his eyes swollen shut and another week with stitches across the top of his head.  The surgeons managed to perform the operation without having to shave Will's hair (which had only recently grown back after being repeatedly shaved off to place IV's in his scalp at "the hospital").  It may sound crass to worry about whether or not your child has hair when they have been through catastrophic medical problems.  However, not having his hair shaved was a tangible sign of Will's entrance into the world of "regular" kids.


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The success of the surgery was apparent as soon as Will's swelling diminished.  He had a prominent brow to go along with the twinkle in his eyes.  An unexpected benefit of the cranial surgery was that Will's vomiting practically ceased altogether.  It was suggested to us that his vomiting may have resulted from intracranial pressure (that was relieved by the cranial surgery).

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Will also experienced another important milestone during our trip to Boston.  He attended his first major league baseball game at Fenway Park.  Will saw Roger Clemens and the Red Sox defeat the Angels.  We still get tears in our eyes when we remember walking hand in hand with him into the ballpark.


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