Monday, May 22, 2006

Well, tomorrow morning at 9am we meet with Dr. Wagstaff up near CMC. He's a clinical geneticist, and will be telling us if there were any genetic abnormalities, chromosomal additions or deletions, any as-of-yet undiagnosed syndromes that Nova suffered from. I feel fairly sure there weren't any, that all the tests will have come back negative. We already know that the DiGeorge testing was negative, and that was the most likely culprit. Had they found any sort of genetic cause for his heart defect, we'd have heard about it while he was in the hospital.

It's a moot point for me though really, with my tubes tied and all. Mostly we're following up on the off-chance that our kids would need to know about anything they found. With five kids, the chances are that I'll have a boatload of grandchildren, and before my kids go conceiving they should be aware of any possible risks. So off we go to another doctor about Nova, 46 days after his death.

He's now been gone for as long as he was hospitalized, a day longer actually.

So. Part of me needs to know what caused his heart defect. Chances are, we'll never know. That's one of the hardest things about CHDs, accepting that no one knows enough to tell me why they happen. I suppose if they were able to point out a genetic link, I'd only wonder what caused the genetic problem to happen. Human nature dictates a need to know, it's part of what separates us from animals: higher learning, a thirst for knowledge.

There will always be more WHYs, and I don't think any of mine will be answered at tomorrow's appointment. And as much as I want to know, as much as I need a reason so I can make sense of it, I also hope, for my children and grandchildren's sake, that there are none to be found in Dr. Wagstaff's charts.

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posted by Erin @ 12:42 PM   0 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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