Cora's Story: 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?

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!