Tuesday, July 5, 2011

Breaking Down Preconceptions

Before I start my post, let's be clear about one thing: I did everything that I was supposed to do. I consulted a doctor before I started to attempt to conceive. I was on pre-natal vitamins before. I stopped drinking alcohol, cut out caffeine, no tuna, no soft cheeses, no lunch meat all before conceiving. I never smoked nor took drugs nor medications not okayed by my doctors. I even left the room if someone lit up. I started all of this before conceiving. My primary care doctor told me if I was planning to have a baby, I should start acting like I was pregnant for the two months preceding our first attempts. So that is what I did. Yet, my daughter was born with multiple, complex congenital heart defects.

As we've discussed before, I sometimes feel responsible for the Dancing Queen's conditions. It is highly likely that her myriad of problems stems from her micro-deletion of chromosome 22q11.2. (There is an extraordinarily high correlation between conal truncal heart defects like DQ's and the deletion, but there has been no direct connection showing definitively that the 22q deletion causes heart defects.)  But, most CHDers don't know why they have defects.

That bears repeating: There is no explanation (yet) as to why most CHDs occur!

And so when I learned recently that a college entrance exam study aid stated that most CHDs are caused by the mothers drinking or using drugs, I got very upset. A CHDer noticed this egregious error, wrote the publisher, and the error will be corrected. But the problem is bigger: like the origin of the misunderstanding.

Generally, people believe that only mothers who do something wrong will have children with defects. Afterall, that is why I blamed myself for so long. And that is why so many heart moms feel guilty at least for a while. This societal belief that only "bad" moms have sick babies is why CHD awareness is hindered. Until CHD is personal, nobody believes it is possible.

The head in the sand mentality has to change. CHD does not discriminate based on race, on income level, on nationality. Yes, there are things you can do that will increase the odds of your baby developing a CHD. But, even if you do everything right, there is still a 1 out of 100 chance your baby will be born with a broken heart.

What's worse is that routine screening is not yet done for CHDs in the majority of states and many children go undiagnosed until it is too late. And despite the prevalence of CHD, parents are not taught the warning signs before bringing their newborn home. This has to change.

You may wonder why I care. Afterall, my daughter was diagnosed and she is receiving care. But I feel that all babies are important. Not one should be lost because much of the medical community is living 50 years in the past where children simply died from their CHDs and it didn't matter if the CHD was detected. Today, the sooner the CHD is detected, the much greater chance of survival. There is no reason why a child with a hole in their heart should go undetected into their teen years when it is too late to fix the hole and they are suffering from other uncurable, life-threatening diseases caused by the hole. No more children should be lost because nobody looked to see if there could be a problem.

I hope you will join me in helping to change this egregious oversight. First, if you are pregnant (or know someone who is), request that the newborn have a pulse ox done before leaving the hospital. The doctors aren't necessarily going to hear any heart problem and ultrasounds can even miss that your baby only has half a heart. The pulse ox does not detect CHDs, but it is an inexpensive, non-invasive tool that should warn doctors a problem may be present and more tests need to be done (it determines the percentage of oxygen in the baby's blood and should be over 97%). A pulse ox doesn't hurt and is found in every hospital. For a baby, it looks like a bandaid, but not quite as sticky.

Second, learn the warning signs. If your baby is blue at all, demand a pulse ox. I've heard stories of nurses telling new moms that some newborns just turn blue and it is common. Your baby should not be blue! If they are blue, they are not getting enough oxygen and could have a CHD. By blue, I mean even if their lips, fingers, or toes are not pink, but purplish in shade. DQ's hands, feet, and lips were very blue when she was born and she still gets that way sometimes (like today). If your baby tires very easily while eating or sweats while eating, that could be a sign of a CHD. Rapid breathing is also a sign of CHD.

Third, write Health and Human Services Secretary Sebilius and tell her you want pulse ox mandated for all newborns. She is considering rules that would implement a pulse ox for every newborn in the country, yet doesn't believe we care enough to save babies' lives. I care! If you care too, here is a link to a letter you can customize and email to Secretary Sebilius: http://www.writesomeone.org/en/component/mtree/recommend-newborn-screening-for-critical-chd.

Finally, pass this information along. The best way to prevent the loss of these children is to educate their parents. Parents are the frontline defense for their kids. When you pass this information on, if the mother or father shuts down and doesn't want to think about it, ask them one question: What is the life of your child worth? We're trying to save lives.

1 comment:

  1. Thank you so much for posting this. My sister is going through life with a baby who had multiple CHD missed and suffered massive brain damage 3 weeks after she was born. It's a nightmare, and it's extra frustrating because her suffering brain damage was preventable if they would've caught all 3 of her defects at birth. It isn't the parents' fault though... and that misconception definitely needs to be erased.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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