A narrative account of Will's health problems

Impact of Will's medical problems on our family

Needless to say, Will's medical and developmental struggles have had a devastating impact on our family.  We were informed on several occasions that Will would not survive.  We had to make decisions on several occasions that had clear life/death implications for Will.  These included placing a DNR order, opting not to do the definitive repair at the initial hospital in 1994/5, and the decision to pull the clotted central lines (in 1994).  We had to see our infant suffer through horribly painful conditions (loss of his fingertips, numerous needle sticks) and consented to procedures for conditions that in hindsight might have been avoided (ureter repair, cranial surgery, femoral surgery).  We have also had to struggle for every opportunity to parent and love our child in the alien environment of an intensive care unit.  In order to parent our child, we learned every nursing and medical procedure that we were allowed to do (from trach changes to g-tube feedings to use of the monitors and ventilator).  We also had to endure the berating of physicians who targeted us for release of their frustrations over Will's condition. 

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The crushing reality is that all of this might have been avoided if Will's heart had been surgically repaired during the first week of life.  Had we known about the treatment plans and results at institutions such as Children's Hospital of Boston at the time of Will's birth, we would have immediately sought treatment at such facilities.  Realistically, Will might have died or experienced complications if he had undergone the definitive repair of his heart in Boston during the first week of life.  However, he survived it 1-1/2 years later, despite the fact that he was in critical condition, suffering from multiple-systemic problems, and had undergone three previous heart surgeries (that made subsequent heart surgery riskier).  We saw several newborn children with Will's condition in the hospital at Boston who underwent the definitive repair in the first week of life.  It is difficult to shake the image that Will, like those children, could have had a much more normal life.  Will has lost his infancy, had his childhood altered and delayed, and we fear that he may have lost his potential for adolescence and adulthood.  His life (however long) will be filled with medical procedures and concerns.  In the first three months of this year he will have undergone three hospitalizations and as many as five surgeries or significant procedures (and this is at a time when he is healthier than he has ever been).  On top of this, something as minor as the stomach flu raises concerns that he may aspirate if he vomits.

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Having said all this, there is not a day that goes by that we fail to give thanks that Will is with us.  He brings joy into our lives and every day teaches us about the true meanings of love and courage.  We would give anything to take away his medical problems and suffering (even for one day).  Every time he needs another surgery, we wish that "we could undergo this one for him."  The reality is that all we can do is love him, advocate for him, and enjoy every day with him and his brother.  The glass is never half full with Will.  We seem to be both utterly amazed and thankful that he is here or utterly despondent about the suffering he has and will experience.  But that is our burden.  Outwardly, we are simply trying to raise regular kids who skin their knees, love the library, and probably watch too much television.

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