A narrative account of Will's health problems

Winter 1996 to Summer 1997

The remainder of 1996 was characterized by Will's ongoing introduction to a world full of playgrounds, steps, and snowstorms.  We watched as he made the transition from using sign language to talking.  We were truly amazed by the progress he made with his speech, physical, and occupational therapists.  We feel very fortunate that Will has had many wonderful therapists who have helped him learn to communicate, eat, walk, and interact with the world.


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On November 21, 1996, we marked the one-year anniversary of Will's heart repair in Boston.  In many ways this date was as significant to us as Will's birthday and was a day for us to reflect and give thanks.


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Will continued to struggle with ongoing health and developmental problems during this time.  Educational testing revealed that Will had deficits in all areas of functioning.  He still required his gastrostomy tube and small gains in eating were frequently set back by colds and flu.


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In April, 1997, Will underwent surgery in to close the fistula (or tiny hole) in his former trach site.  Unfortunately, we learned during this procedure that his vocal chord was irreversibly paralyzed (we still held out hope prior to this time that he might recover some functioning).  However, we learned that his paralyzed vocal chord had migrated toward the midline giving his airway better protection.  Will also underwent a dental assessment during this procedure.  His teeth had been damaged and discolored by a combination of chronic vomiting, lack of saliva (due to diuretic medications), and oral defensiveness.


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In June, 1997, Will returned to Boston Children's Hospital for his annual follow-up.  His urology and cranial appointments were unremarkable.  However, his cardiologist informed us about renewed concerns regarding his aortic arch (which had supposedly been repaired at "the hospital").  We were informed that his aorta should be carefully monitored and that it might require surgery in the future.

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In July, 1997, we received another blow when we learned that Will had a malformed femur and thigh.  We were informed by physicians at three hospitals that this condition likely resulted from being chronically bedridden during the first 18 months of his life.  They informed us that the development of Will's femur was probably impaired by the fact that he did not bear any weight on his legs.  All three appraisals recommended reconstructive surgery of the hip and femur, ideally within the 3-4 months.  We were informed that Will would likely suffer from chronic pain and disability if this condition was not corrected.  The corrective procedure involved cutting Will's femur in two and then remolding the femur and the hip.  The surgery required six weeks in a body cast and a second surgery approximately one year later to remove metal screws and brackets.  This news was a devastating blow to us because it meant subjecting Will to yet another surgery followed by almost two months of immobilization.  It also meant that another part of Will's body would be cut and scarred.  We also wondered whether this (like so much of his suffering) might have been avoided if Will's heart had been repaired immediately after his birth.

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