So February has become Heart Month, and the purpose is to spread awareness about heart disease. And within the month, (specifically February 7-14) there is a week dedicated to Congenital Heart Defects.
A lot of us parents have been frustrated at the lack of research and awareness there is about heart defects. But we are realistic; for almost every disease and illness (save breast cancer) the people who usually are aware and active are the ones directly affected by it. It makes sense and I’m not angry or bitter about it. But I guess the difference for me is that a lot of people have babies, and a lot of those babies go home from the hospital without ever having a single test for heart defects.
Mamas, did your hospital do anything further than stick a stethoscope on your baby’s chest? Your baby’s heel was pricked at least once and maybe twice to test for PKU, a disorder that affects between 1 in 10,000 and 1 in 20,000 people. But a simple, painless test could have been done to let you know if your child had a defect that occurs in 1 out of 100 children.
I know that the blood tests check for other disorders besides PKU, but I also know that none of the other disorders occurs nearly as frequently as heart defects.
And the problem is that right now most of the people advocating for this little test, a pulse oximetry test that checks the levels of oxygen saturation in the blood, are parents who already know that their babies have heart defects. Some of us knew beforehand, some found out at the hospital after the baby was born, and some found out at home, when their babies began to turn blue and struggle to breathe.
In the US, congenital heart defects kill twice as many children each year than all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. It’s not a competition, and it need not be either/or, but there should be more funding and research for CHDs.
One reason for the difference is that most heart babies and children don’t always look sick. Unless Charlotte has just climbed the stairs in our house, you would have no idea that she is sick. And no matter how many times I tell the story, people will ask me the same question over and over again: “does she have to have any more surgeries?” Yes. Her outer appearance has no bearing on the inner workings of her heart.
I can’t stop thinking of this little family we met while Charlotte was at Duke for her last surgery. The parents were young, just barely out of their teens if at all. They were an African-American couple, and their tiny baby girl was dying. They delivered her in a hospital in Wilmington and took her home two days later, just like normal. I only mention their race because it’s even more difficult for parents of African-American babies to detect a subtle change in color. She was in distress by the time they noticed something was wrong. She had to be airlifted from Wilmington to Duke, and her sweet parents had nothing but the clothes on their backs with them while they sat in that little waiting room for news.
That baby girl was in heart failure for THREE DAYS before her parents took her back to the hospital. Three days. A tiny little test that should have been done and that could have been done was not done. I don’t know if she lived or not; we believe she died because her parents weren’t in the waiting room two days later, and we never saw them in the PCICU or on the floor again.
I won’t belabor the point anymore; we need help. The babies need help.
The American Heart Association, while a wonderful organization that has done amazing things in advancing research and education on heart disease that has no doubt saved countless lives, gives less than one penny of every dollar they raise to congenital heart defect research. That’s not a lot of money.
The Children’s Heart Foundation is the only foundation that raises money exclusively for research and education on CHDs. And this May our little family is going to lace up our tennis shoes and help them raise more money.
On May 22 we will be walking in the Congenital Heart Walk to raise money and awareness for congenital heart defects. We’ll be walking in Washington, DC, and we would love for you to join us! Spring is a great time to take a walk around our nation’s capitol.
And if you can’t join the team, will you please consider donating to help us?
(Here’s that link again for those of you who are embedded-link-impaired: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=463888&supId=320665732).
We are looking into doing tee-shirts and some other fun things to raise money and to thank those of you who donate, so stay tuned.
And I know I’ve said it before, but I can never say it enough- thank you all so much for loving and praying for our girl and our family so much. You are all a treasure to our family!