Wednesday, May 24, 2006

I am too bungle-brained lately to multi-task. I posted earlier, or at least, I thought I did, but it isn't here, and I have no idea where it went. Interesting. Guess I'll try it again.

I called Dr. Watts' office yesterday, in hopes of getting a full list of the hospitals that handle CHD cases. Dr. Watts was out of the office, which was no surprise at all, he's on the go, patient to patient, all the time. I'm not sure (aside from Diet Coke) how he keeps it up. I didn't get to talk to him, I didn't expect to, but I did get to speak to a very helpful receptionist who seemed to want to help. Since Dr Watts was out of the office, and his receptionist was unavailable, she said she'd send the message to him, and felt sure that Dr. Watts would have the list I was looking for. He's supposed to call tomorrow. I hope that he calls, and not his receptionist. I'd have a couple of other questions I'd like to ask him too.

He's been doing these surgeries in Charlotte for 10 years, and in 2 cities for 5 years before that. I'd like to pick his brain a bit about how often he sees cases like our family. I'd like to get an idea just how rare it is. I know that as soon as I said Dr. Wagstaff said it was rare, I had heard of a total of 3 families other than mine who had multiple children with CHDs.

I don't know if that means it isn't as rare as Dr. Wagstaff thinks, or if it really is that rare, and I only heard of these other families because of this online heart family network, and the way we all sort of come together. The internet brings people together with their stories - birds of a feather flock together they say, and that's certainly true with heart families.

Today I talked to Mika of The Maeghan and Heidi Heart Foundation about the CHD Quilt. I'd love to see it hosted locally, and It'd be a dream to see all 34 quilts at a big function locally. Two problems with that: There has to be a CHD event to host it (of which I know only one, small, yearly function) and, it costs $50 per quilt to host - that's a total of $1700.00 (plus several hundred in shipping and shipping insurance.) Neither Mika or I have that sort of cash.

So she knew of another couple who lost a child about the same time her daughter Maeghan died. A family who started another charity organization in their son's name, and they happen to have a large pocketbook to back it up. We're hoping to be able to hook up with them, and whatever events they might have, which would be hospital-based functions, meaning, hopefully, if things were to go right, it could be something large enough to actually fund hosting the quilt, and still be a major fundraiser for CHD Awareness.

Unfortunately, none of it would be in my hands, I'd be strictly a spectator, not that it matters really, what would matter would be that funds, and awareness, would be raised. If anything comes of it, I'll be sure to let you guys know.

posted by Erin @ 11:53 PM   2 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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