A narrative account of Will's health problems

Fourth Hospitalization:  11/19/95 - 12/19/95

Then a miracle happened...  We became acquainted with a new cardiologist who had trained at Children's Hospital of Boston.  She recognized that Will had a repairable heart from birth and referred us to a cardiologist and surgeon in Boston.  In the middle of November, we found ourselves flying on a medical transport plane to Boston.  The day after we arrived, Will had a cardiac catheterization and the next day he was scheduled for surgery.  Two days before Thanksgiving, Will's heart was definitively repaired in a twelve-hour operation.  Needless to say, it was the most wonderful Thanksgiving present imaginable.  Will's trachea tube was removed during the surgery and for the first time in over a year, he breathed through his nose, not a hole in his throat.  And for the first time in his life, Will had pink finger nails full of oxygen-rich blood.


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We received support from many wonderful friends who had moved to Boston prior to Will's surgery.  Will's honorary aunts and uncles sat with us through all of his surgeries and stayed with Will so we could eat or rest.  Will's godmother even flew from Wisconsin to be with us during the surgery.


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Will's recovery in Boston seemed like a miracle to us.  We sat with Will in our lap looking out his hospital window at the lights around Fenway Park and realized for the first time that our son had a chance to grow up and go to baseball games.  We whispered to him about the day that we would take him to a game at Fenway Park. 

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Amazingly, the physicians at Children's Hospital of Boston informed us that they have a 97% survival rate for such heart repairs and that they routinely perform them during the first week of life.  Several of the treatment staff in Boston expressed genuine shock that we had "waited so long" for Will to have the surgery.  Will's surgeon in Boston informed us that waiting to fix the heart simply puts the rest of the body at risk for complications. 

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Approximately two weeks after the heart surgery, Will underwent two surgical procedures that repaired his ureter and saved his kidney. 

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One week before Christmas, we returned home with a brand new little boy who was not connected to any tubes, wires, or equipment.  For the first time in 1-1/2 years, we could pick up Will and run through our house without having to worry about disconnecting any equipment.  It truly was a joyous holidays! 

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While in Boston, Will underwent several other assessments.  On the positive side, Will had a comprehensive genetic assessment that ruled out any signs of chromosomal abnormalities or any genetic syndromes underlying Will's health problems.  It was suggested that Will's heart condition was a developmental "fluke" which occurred around the ninth week in utero.  On the negative side, we learned that Will suffered from a hearing loss which we were informed were possibly the result of antibiotics early in life. 

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Equally disturbing, we learned that Will had a paralyzed vocal cord, that was likely the result of severing of the nerve enervation during one of his first three heart surgeries.  The paralyzed vocal cord has placed Will at chronic risk for aspiration and pneumonia.  Since the removal of his trach in Boston, he has experienced approximately one dozen separate cases of aspiration pneumonia, many of which have required hospitalization. 

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Lastly, we were informed by a neurologist and a cranial facial surgeon in Boston that Will required surgical intervention for his craniosynostosis.  We were given the option to remain in Boston for that surgery, but we could not bear the idea of putting Will through another operation at that time.

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