A Broken Heart

Incidence:
35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Treatment:
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
Mortality:
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Tuesday, June 8, 2010

kisses

Oliver started giving "kisses" today. He's been giving loves for a while. When I ask him to give me a love (if he feels like it), he puts his head down on my shoulder, wraps his arms around me and croons, "awwwww." Sometimes I'll even get a few love pats from his hands.

His kisses are just like the ones big sister started giving at just about the same age: He hears the word kiss, slightly opens his mouth and plants it on your mouth--a little wet and slimy, but oh so cute. So far, he has only given kisses to big sister and me (big sister got his first kiss). He just ignores requests to "kiss papa." The chipmunk growing on Kevin's chin serves as an effective deterrent.

semi-annual cardiology appointment

Yesterday, the kids and I went to Oliver's cardiology appointment. For the first time ever, I didn't use my angry voice while were there....or even feel like using it. Big sister was helpful and prompt in responding to my requests and Oliver had great fun running all over the waiting room. We even made it through the entire echocardiogram (with the help of a cell phone, three flashing toys, peanuts, an ipod, a bottle, a book, a video, and flashing ceiling lights!!!) Whew! 40 minutes is a long time for an 18-monht-old to sit still.

the upshot: another 6 month reprieve

the details:
weight: 21 pounds and 10 ounces (5 %)
height 30.75 inches (13%)
head 47.6 cm
heart rate 121
blood pressure 91/60
oxygen saturation 100 (that's a first)
his valves look pretty much the same as last time in terms of backflow
his pulmonary valve (the donor valve) has moved from the mild to the moderate category (just barely says the doctor) in terms of narrowing--he won't need surgery until the narrowing becomes severe
The doctor was happy taht Oliver is staying at the small end of the growth curve. The slower he grows the longer it will be before he outgrows his replacement part and need his next chop and hack.

Saturday, June 5, 2010

Friday, June 4, 2010

angry

The last few weeks, I've been angry. The anger was triggered by two different blogs and Oliver's eating.

Two weeks ago, I read this (read to the bottom), and was once again overwhelmed with anger that I failed my daughter. Growing up as the oldest sibling of a special needs child didn't bother me too much. After I grew up, however, and was legally appointed as my parent's next-in-line, I got angry and resentful. That was the one thing about my life I wanted to spare my daughter. Everything else was fine, even desirable (the moving, the weird family values, the strange food, everything, even if I didn't like it as a child), but being the older sibling to a special needs child was definitely something I wanted to spare her. Of course, there is a chance Oliver will not need any special consideration from his sister and E seems to adore her little brother at the moment...

Yesterday, I read the blog of a family whose daughter got a heart transplant (I can't remember how I got there) and I got angry again. "I would never give permission for that," I ranted to my husband. I don't know why the thought of O getting a transplant makes me so angry (not that he needs one)--it does. I have a friend who is waiting for lungs right now. I'm not angry about that. I wish he would get his lungs soon.

I think my anger at Oliver's meager eating comes closest to home. He is not the big eater his sister was. He is a scrawny runt. I stress about that. Lately, he's seemed to get even scrawnier and I stress about that. I explained it to my friend, "I force fed him for 8 months. He didn't like the bottle, so I would wait until he was asleep and then shove a bottle in his mouth. When he finally decided he liked the bottle, it was time to switch to solid foods. He's just as much of a stinker about those as he was about the bottle. I don't have 6 hours a day to devote to feeding him. I refuse to try to feed him every 20 minutes so I hit that magic window of hungry-but-not-too-hungry when he will actually eat. I have a daughter, too. I've given him enough."

I think that's what it boils down to: I don't feel like giving him any more extras. A heart would be an extra and would require endless changes in our family's lifestyle. Getting him to eat takes away time from my daughter and things I'd like to do. His health issues are not just about him--they impact our whole family. And, another thing that bothers me a lot is that my husband and I have to make these decisions. These are decisions that only the person most affected should ever have to make. Do you want a series of open heart surgeries throughout your life? Do you want to be medicated your whole life? Do you want to have no immune system? And yet, Oliver and the other children with heart defects out there can't speak for themselves. I am left making decisions for my son, decisions that I would dread making for myself--and I don't know what he would want! Arrggghhh! Frustration!