Congenital Heart Disease Awareness Week

A sad story with an important message from Kristine, a friend of Heather's, over @ http://thespohrsaremultiplying.com

The Spohrs are Multiplying. CHD occurs in 1 in 125 babies in the United States. After your baby's born, ask for the pulse oximetry test.

here's Kristine & Cora's story:

Leaving the hospital as a first-time mom, I felt scared, but confident.

My daughter, Cora, scored a nine on both her Apgar tests, breezed past the hearing test, wasn’t jaundiced, and I bragged to the nurses, had already had several wet and dirty diapers (always a good sign, I’m told).

After she was born, my husband stayed with her when she went to the nursery for her first checkup. He came back with a huge smile on his face. “A perfect report,” he said with triumph.

We breathed a deep, and relaxing, sigh of relief. Our baby was here, and she was healthy. And, oh yes, she already had a new nickname. Mega Cheeks. The physician’s assistant (who had quite pinchable cheeks herself) took one look at Cora and with a huge grin announced, “She’s got some MEGA cheeks.”

We called her that for the next five days. My little Mega Cheeks.

Two days later and the time to go home as a family was here. I sat with Cora in the back of our minivan (yes, we had already switched to the mom mobile in anticipation of a new family). The scene was lifted straight out of a cheesy movie. My husband drove about 10 miles under the speed limit.

The next three days brought extreme and absolute happiness as Cora and I spent our days listening to music and snuggling.

One early morning I was breastfeeding her. I looked down and she was dead. Just like that. Happily suckling one moment, a brief look up to tell my husband something, look back down, and Cora is covered in blood, limp, pale and not breathing. Dead.

Of course, I was extremely confused. All those nurses and doctors at the hospital had reassured me she was the picture of good health.

I learned from the coroner my daughter’s heart was seriously malformed. She had a congenital heart disease, or CHD.

After the battery of tests at the hospital, how could they have forgotten to check her heart? Why did we leave the hospital thinking she was a perfectly healthy baby? How could this have slipped through? Her heart. With all the tests run in the hospital, surely one of them closely examined her heart?

****

Cora and I save lives now. I learned a simple pulse oximetry (a non-invasive, simple, cheap, and quick) test performed at 24 to 48 hours successfully screens for some CHDs, especially the most lethal. But, they aren’t routinely conducted on newborns. I hope that changes soon. I also learned currently no test can catch all congenital heart diseases. I’m working frantically to find a way to change that.

I was a bit embarrassed. I had to look up congenital heart disease when I hung up the phone with the coroner. I’d never heard of it. Congenital heart disease is the most commonly occurring birth defect. The numbers vary a bit by country and organization, but according to the March of Dimes, CHD occurs in 1 in 125 babies in the United States. Others say that number is closer to 1 in 100. Not all CHDs are as severe as Cora’s. Thousands of adults and children live with a CHD every day.

Heather reached out to me shortly after Cora’s death and virtually took me under her wing to comfort me as I started on the sad path of mourning my baby. I’m in awe of her fearless work to save babies and help mommies and thank her for helping me spread Cora’s Story. I picture us hand and hand fighting to save these little lives. I think somewhere Maddie took Cora under her wing, too. Even if they only meet through my imagination, I picture them playing, laughing, and sparkling in the sunlight.

February 7 to 14 is Congenital Heart Disease Awareness Week. Please spend a few minutes learning more about CHD. I wish every day that I had taken a few moments while I was pregnant.

http://thespohrsaremultiplying.com/2010/02/for-cora/