Still Holding Steady

Many of you know about our son Kendall. But some of you may not. For those who don't, here is a brief summary: Kendall was born with a congenital heart defect called Shone's Complex or Shone's Syndrome (we've heard it both ways) which is basically two or more problems with the left side of his heart. In his case he had a coarctation of the aorta, mitral valve stenosis, and a thickening of his left ventricle. We discovered the problem at his two month well check and our lives changed dramatically that day. He was rushed to the hospital where they gave him medication to lower his blood pressure (he was near stroke level) for a couple of days before they took him to surgery to fix his coarctation (his aorta was narrowed significantly enough that blood was barely pumping into his lower extremities). He recovered from that very well and we spent the next couple of years just monitoring his condition with pediatric cardiologists. Then shortly after he turned three, Kendall began having breath holding episodes that would cause him to stop breathing and lose consciousness. At first his primary care doctor told us that she thought it was normal because she had several other patients who did the same thing. But when the episodes became more frequent and were not associated to crying (he passed out one day when we were walking rapidly from one building to another), we knew something was up. Sure enough, when we saw the cardiologist, he agreed that the mitral valve had worsened and was the cause of the blackouts. They first tried a heart catheterization and did a balloon procedure to see if that would make any difference. It didn't. He continued to get worse and worse and soon it was impossible for him to even climb our stairs on his own without getting so breathless that he would pass out. So when Kendall was 3 years and 9 months old he had open heart surgery to repair the mitral valve. The whole procedure was absolutely miraculous. He came out of it with his own valve intact rather than the artificial valve they had told us to expect. The doctor himself was amazed at how well it went and kept looking at his hands like he couldn't believe they had performed that procedure. Kendall spent only four days in the hospital and then rebounded in major way. For the next year or so he ran everywhere he went for the sheer joy of it. He has played soccer since he was four years old and loves any sort of thing that requires activity. The doctors always caution us that it is likely that he will have to have the valve replaced at some point and the problem with his ventricle remains as well. For now he takes a blood pressure medication that has the side effect of helping hearts to relax. The idea with that being that if there isn't so much pressure put on that ventricle, it won't harden any more and may in time actually have some tissue regeneration. We hope and pray that is the case since there is no repair for a ventricle other than a heart transplant. We are just thankful everyday for amazing medical science and for the power of prayer.

So anyway, Kendall just had his annual exam with his cardiologist and once again the report was fabulous. He had an echocardiogram that showed that everything had remained the same with both of the repairs he's had done. It has been almost six years since that last surgery and we feel so blessed that he is holding steady year after year.

If you get a chance, click on the Living For Eden link on my sidebar to visit the blog of Paul Cardall. He is a husband and father and a very talented musician with CHD who is currently waiting for a heart transplant. He has just made a video for YouTube featuring a whole bunch of CHD kids to get the word out about how common congenital heart defects are. It is set to some of his beautiful music, so that's a bonus as well. Take a look!