The hospital where he was born serves a rural area so there was no-one specialized in performing infant echocardiograms but there was a back up plan for the adult echocardiographer to perform the test and she sent the result immediately to a pediatric cardiologist Dr Tripp in Asheville NC, 2 hours away from us. Dr Tripp determined that Joel had severe aortic stenosis, so he was flown from
At Duke Joel was monitored in the PICU for 4 days. It was hard to see our tiny son laid out under a warmer with a swarm of wires and tubes attached to him, and not being able to breastfeed him or hold him properly. Various procedures were discussed but Joel seemed to be coping with the aortic stenosis very well so in the end it was decided to do nothing. I was allowed to nurse him on Friday February 14th 2003 for the first time since he was 36 hours old – a wonderful Valentine’s Day gift. He nursed well immediately and the wires and tubes began to be systematically reduced and he was taken out of intensive care and released to a general pediatric room for another few days monitoring
We were let out of the hospital on Monday February 17th and then had to begin our 7 hour drive home from Durham to Brasstown NC with a 1 week old infant, completely unprepared for traveling other than his car seat. It was an arduous trip made longer by snow and having to stop to nurse every couple of hours. We got home at shortly before midnight and collapsed. Joel was then monitored by the
At 9 months old, November 2003 he had balloon valvuloplasty at Duke where a catheter with a small balloon is inserted into the artery in the groin, fed up to the heart, through the valve & pulled through the valve to stretch it. The major indication that our cardiology team been watching was the difference in the systolic pressure of the blood in his left ventricle to that in the rest of the system. Its called a ‘gradient’ but basically it’s the number of points higher. Joel’s gradient was 83 so whereas his main body blood pressure was about 80/50, in his heart it was 163/50. The balloon made a big difference, brought the gradient down to about 50 and caused only a minor trace leak. Joel was in and out of Duke in 48 hours and although there was some bruising around the catheter site it was really quite minimally invasive.
Joel’s condition was monitored with regular appointments. His aortic valve could be ballooned again, probably one more time and then surgery to replace the valve. The fine line judgment was just how long to leave the valve, kids can be asymptomatic and then die suddenly with these high pressure valve problems. Joel’s first balloon saw him through to the age of 3 yrs and 2 months, April 2006 when he had a second one. His gradient was much higher this time, it was up at 100 points above his regular blood pressure so it had really been left a little too long but it’s a fine line call and the echocardiography results are sometimes not absolutely perfect. Again he coped with the procedure, the anesthetic and the hospital stay amazingly well. The result was that the pressure difference was much reduced but he was also left with a significant leakage, causing some of his blood to reverse flow in his aorta near his stomach back to his heart. The symptoms of this will manifest more obviously as tiredness as his muscles do not get the full blood flow and we have seen this a little in him in the last couple of months.
We don’t know how long he will last with this situation before needing surgery to replace the valve but he will have regular cardiology checkups every 6 months hope that we go at least 2 or 3 years.
Lynda Metcalfe
July 1 2006
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