Cora's Story

My kid changed the law.

I hope you’ll excuse my blatant mommy gloating. But, I’m quite proud. My daughter is different than most. She’s a super hero. She saves lives. She also only lived for five days.

After a healthy pregnancy, I gave birth to 8 pound, 10 ounce Cora on November 30, 2009 via a completely healthy and normal labor.

We took her home two days later. One morning, I woke to breastfeed her. Everything was going just fine. I looked up for a brief moment to tell my husband something. I looked back down. Cora was grey. Cora’s face was covered in blood. Cora wasn’t breathing. A 911 call. Rush to the hospital. They couldn’t save her.

Cora was gone.

For two days, I wondered what had happened. I found out from the coroner she had a congenital heart defect, that’s what caused the blood to back up to her lungs.

A few weeks later, and I found out that something quite simple might have saved her.

I’m sure at least 99 percent of you have had this done.

Pulse oximetry is a light sensor that reads the oxygen level in your blood. In adults, it’s a small clip placed on the end of your finger. For babies, it’s just as non-invasive and cheap, but looks like a little bandaid and is wrapped around the hand or foot.

It’s often called the fifth vital sign. It’s on the same level as getting your temperature taken or blood pressure read. Imagine hearing your daughter’s life might have been spared by something so easy.

Turns out, only about half of all congenital heart defects are detected in utero. CHDs vary widely in severity from a small hole in the heart that doesn’t affect the patient to defects that require immediate life-saving surgery. About one in every 100 babies are born with a CHD, according to the March of Dimes.

Even pulse oximetry screening doesn’t detect every CHD, but Cora’s was one the screening might have caught. It catches many of the most severe, especially when conducted properly, and after 24 hours of life. And, because the parents are told why their child is being screened, they’re aware of CHD and hopefully more likely to report any signs and symptoms. Babies with CHD sometimes turn blue, breathe heavily and have trouble feeding.

I wrote my state senator and worked with him to author a bill to make sure every newborn in Indiana was screened. I can now proudly say that it’s part of the code here. It’s law. Starting in January 2012, every newborn will be screened in Indiana.

I know as mothers, it’s frustrating to think about another level of interventions for our children to go through. But, this is different. This is basic screening for something simple. Mothers can certainly opt out of the screening, but at least their child will have the opportunity to be screened in Indiana, thanks to Cora.

New Jersey and Maryland have also passed laws dealing with pulse oximetry screening. Other states are considering. In other states, mothers and fathers are working to make sure what happens to Cora doesn’t happen again by meeting with legislators, policy makers and raising their collective voices in traditional and social media.

No mother should ever find out about her baby’s broken heart from the coroner.