A narrative account of Will's health problems

First Hospitalization:  5/12/94 - 6/26/94

Will was born by Caesarian section at 36 weeks on 5/12/94 at Meriter Hospital in Madison, WI.  Immediately after his birth, he was taken to the neonatal intensive care unit due to respiratory distress.


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Later that day, he was diagnosed with a severe congenital heart defect (double outlet right ventricle with transposition of the great vessels, coarctation of the aorta, atrial-septal defect, and ventricular-septal defect).


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Will was transferred the next day to the Pediatric Intensive Care Unit (PICU) at "the hospital."


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It was our understanding that Will would not survive the definitive repair of his heart.  Therefore, it was decided that Will would undergo a pulmonary artery banding (PAB) surgery, which would limit the flow of blood to his lungs.  It was our understanding that Will would be discharged after several weeks and come back in several years for the definitive repair.  As we later learned in Boston, this was an unfortunate treatment choice that resulted in 18 months of hospitalization and destroyed part of his pulmonary artery.


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During his first week of life, Will had a cardiac catheter procedure and PAB heart surgery.  Again, we were under the impression that he would be discharged within the month and that he would require the definitive repair of his heart much later during childhood.  Following Will's first surgery, he received an overdose of benzodiazipines during an extended period of time.  The medications were given through an IV pump at 10x the prescribed dosage.


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Will failed to improve following his heart surgery.  Therefore, several weeks later he underwent another cardiac catheterization and a second PAB heart surgery.  Following the catheter procedure (which went in through his groin), he experienced a collapse in the circulation of his left leg.  His leg turned purple and there was concern that he might lose his leg.


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During this hospitalization, Will was orally or nasally intubated and continuously on a mechanical ventilator.


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His condition improved and he was discharged (with much fanfare and joy) when he was approximately seven weeks.


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