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.
- 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?
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.
- 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.
- 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.
- Overview of Congenital Heart Defects- An article I wrote on another site.
- Children's Heart Foundation- Working for more research funding and awareness.
- Congenital Heart Information Network- Great information about CHD Awareness Week.
- It's My Heart- CHD support
- Athletes4Heart- Nels biked across the country to raise research funds. Read about his journey.
- Pulse Ox Advocacy- The site I created for information about screening for CCHD.
- Cora's Hopes and Dreams- My site of CHD info
- Email me your favorite CHD resource or leave a comment below!
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