Saving Little Hearts

Our son, Joel Metcalfe Roush was born full term 1am Sunday February 9 2003 at a good size of 8lb 1oz and 21inches long. His breathing required a little assistance for a couple of hours but other than that he seemed to be fine and we were about to be discharged on Monday February 10 when the doctor picked up a heart murmur.

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 Murphy Medical Center to the Mission St Joseph’s NICU on the evening of Monday February 10 and then flown on to Duke Hospital in Durham NC on Tuesday February 11. We followed on in the car, as you can imagine terribly upset and worried for our newborn son and me in a less than ideal physical state having given birth 36 hours earlier. While at the hospital in Asheville Dr Tripp laid out the situation for us. Joel’s aortic valve was terribly narrowed, he had two leaflets in the valve instead of three and they were like cartilage instead of membrane, therefore his left ventricle was having to work very hard to get the blood through it. Their scale of acuteness was normal – mild- moderate – severe – critical. At critical he would need and immediate procedure or operation to relieve the pressure. Dr Tripp placed Joel at severe, verging on critical so she warned us that immediate action may be necessary once he got to Duke.

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 14^th 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 17^th 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 Asheville pediatric cardiology team. The appointment gaps went from 2 weeks to 1 month to 2 months to 4 months to 6 months.

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
Brasstown, NC
July 1 2006