Cora's Story: About congenital heart disease

Monday

About congenital heart disease

I'm still early in the learning process. Cora died only a few months ago. Before she died, I'd never heard of congenital heart disease. Here's some of what I know so far:

Impact of Congenital Heart Disease

Congenital Heart Diseases are also known as congenital heart defects. Over 30 known congenital heart defects exist.
Often the abbreviation, "CHD" is used to refer to congenital heart disease.
According to the Children's Heart Foundation, CHD is the Number ONE baby killer.
CHD is also the most prevalent birth defect, according to the March of Dimes.
About 1 in 100 babies are thought to be born with the birth defect in the United States. Different organizations use a different number, I've seen it as high as 1 in 70.

How do you know if your baby is one of the 1 in 100?

Some CHDs are picked up in utero by a regular ultrasound.
Others can be picked up by a Level II ultrasound.
Some say a fetal echocardiogram should be conducted on every mother and child to test baby hearts.
Others want an echocardiogram, test that uses sound waves to get a picture of the heart, for every newborn.
Right now, Cora and I lobby for a pulse oximetry test on every baby. This test is cheap, quick, non-invasive and should be standard in newborn screening. A couple of groups are working on making this test standard. In Missouri, Kelly from CHD Babies is working for Chloe's Law, making pulse ox mandatory before discharge.
If you're pregnant, use the Earth Mama, Angel Baby birth plan creator, it includes getting the pulse oximetry test for your newborn and reminds you to do so after birth.
Some CHDs can't be detected by known methods. So much more research is needed. Spreading awareness leads to more research funding.

What can you do?

Until pulse oximetry tests are standard. You can tell mothers and fathers to ask their doctor to run a pulse ox on their newborn between 24 to 48 hours of age.
I developed this flyer for pregnant woman, for you look at and pack in your hospital bag.
Spread the word. Awareness means more support for much needed research funding. Awareness means less mothers and fathers will find out about CHD from the coroner.

Please note, I know this list is not comprehensive. And, some people debate the numbers. I've taken everything from reputable resources. If you have questions, email me, kbrite@gmail.com.

More information

CHD Babies- By a mother with a CHD baby, Chloe. Working for standard pulse ox in Missouri, and includes well researched articles.
Children's Heart Foundation- Working for more research funding and awareness.
Join the Fight-CHD- Run by Bobbie-Jo Stewart, an online home for families to gather and get support.
Congenital Heart Information Network- Great information about CHD Awareness Week.
Mended Little Hearts- Support for CHD families!
Athletes4Heart- Nels biked across the country to raise research funds. Read about his journey.
Email me your favorite CHD resource or leave a comment below!

Anonymous, June 02, 2010 2:50 PM: i am a nurse in the L&D and newborn nursery. i am proud to say we do a 24hr pulse ox test. in the last several years since implemented it had never come up with any findings until last week. I happened to be the one preforming the test and the child had a type of CHD. He was rushed to a larger hospital where surgery could be preformed. all the years of not having a case were worth that one little boys life. keeping putting your story out there even though its hard. I know because I lost my little girl due to a neural tube defect. But God willing press onward.
chfva, July 10, 2010 3:05 PM: I have just started the Children's Heart Foundation -- Virginia chapter, but I also wanted to say, Mended Little Hearts works in connection with the Children's Heart Foundation -- Please add a link to Mended Little Hearts. There is also the Congenital Heart Information Network (CHIN). I can't thank you enough for all you are doing to help get the word out there!
chfva, July 10, 2010 3:09 PM: I see you have CHIN on there, somehow I missed it! Sorry! ;)
Deanna, July 29, 2010 7:07 PM: I am a 30 year old woman, who was born with multiple birth defects. I have joint contractures, depression/anxiety issues, and vision and mild hearing concerns. I also have mitro-valve prolapse and aortic root dilation. My parents had no way of knowing anything was wrong until I was born. The doc and nurse would NOT show me to my parents at first.
Now I write poetry and for the past several years have been working on a book for and about people with various disabilities. Who knows? Maybe I'll write a poem based on Precious Cora's story. I write these poems to help others understand what special needs people go through. For any children reading this, if you think you have it tough in school, imagine yourself blind, deaf, in a wheelchair or on crutches. Some of us, like myself, may look normal, but have problems learning or comprehending even the simplest task. Please always keep this in mind. :)