Saturday 25 Oct 2014

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STORIES FROM THE HEART: Grieving mom works to prevent parents from learning of a child’s heart problem from a coroner

Published: 9:00 am CDT, January 30, 2014

February is an important month in the fight against heart disease. In addition to its federal designation as American Heart Month, additional emphasis is placed on the tiniest patient: those with Congenital Heart Defects (babies born with heart problems). Kristine Brite-McCormick is the mother of such a child, a girl named Cora whose problem claimed her life before it was even discovered. Kristine is now dedicated to helping other families avoid such a tragedy. Here is their story, as written by Kristine.

In the moments after my daughter was born, my husband, Ben, and I acted like most new parents, staring at our baby girl in awe as we waited for the pronouncement, “She’s perfectly healthy.”

We let out a sigh, and over the next two days in the hospital let out several more sighs as Cora flew through every check-up. We took her home and settled into around-the-clock feedings and lots of cuddling.

During one of those feedings, Cora was far from healthy. My pink-cheeked newborn grew limp and grey, blood spewing from her mouth, dying suddenly as I fed her, life leaving her in my arms.

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On Easter Sunday 2009, my husband and I learned the surprising, wonderful news that I was pregnant for the first time. We were instantly in love with our unborn baby.

As I went through the various stages of pregnancy, one thing became routine – at every doctor’s visit, I was lucky to hear the news that everything was normal and the pregnancy was progressing as it should.

Cora was born on a cold November evening, after a normal labor and delivery. She was perfect, weighing in at 8 pounds, 10 ounces, and possessing the most pinchable baby cheeks I’ve ever seen. She was pink and lovely, with no signs of what killed her.

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The coroner called a few days after Cora died, and provided the preliminary cause of death, which was later confirmed by full autopsy.

Cora was born with congenital heart defects. Despite reading every book I could get my hands on about pregnancy, and reading pregnancy forums and websites late into the night, I’d never heard the phrase. Simply put, it means she was born with heart problem.

At first, I was simply relieved to learn we had an answer. Can you imagine your baby dying suddenly in your arms? Your baby who was given a clean bill of health? I’d been so eaten up with guilt, questions and fear during the days before the coroner called.

After the feelings of relief rushed through me, I wanted to know why. Why did Cora’s heart malfunction? I’ve since come to know that even the best, brightest researchers don’t always know how or why this happens. We might have some ideas, but for now, there aren’t enough answers.

If I couldn’t know why, I wanted to know if something could’ve been done to prevent this heart problem from causing my baby to die. If something could have saved her life.

Often, congenital heart defects (CHD) are found through prenatal ultrasound. I had an ultrasound but no one detected anything wrong with her heart. Turns out, sometimes heart problems are nearly impossible to find via ultrasound.

I next turned my attention to finding heart defects after birth.

I learned that a simple screening has the capacity to find a subset of heart defects called critical congenital heart disease, and might have found Cora’s defect. The screening used something readily available and used widely in hospitals: pulse oximetry. A pulse-ox is a non-invasive sensors strapped on a toe or finger for a few seconds to check the oxygen levels in the bloodstream.

Cora died right around the time that several large research studies showed that, when used at about 24 hours of life, a pulse oximeter can signal a problem.

***

I couldn’t live another moment without doing everything in my power to make sure that no other mother had to find out about her baby’s heart defect from the coroner.

I studied around the clock. I followed efforts by a Minnesota mom, Annamarie Saarinen, to persuade a federal committee with power to add conditions to the federal newborn screening panel to vote to add CCHD screening with pulse oximetry.

When the time was right, I wrote a letter to my state senator, pleading with him to help me make sure every baby in Indiana was screened through legislation. He introduced a bill in January 2011, and after much letter writing, many phone calls, testifying at the statehouse and many late nights, CCHD screening was signed into law here in May 2011.

Soon, other parents were asking me for advice, so I dove into helping in other states. Now, over 30 states have passed legislation thanks to the selfless devotion of parents who demanded more screening for newborns.

The call to action has been taken up by many, including the American Heart Association.

The power of parents in action has led to a result bigger than all of us.

Newborns are being screened for serious heart problems in more and more hospitals every year. Fewer parents are finding out about their baby’s congenital heart defect from the coroner.

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For more details on Cora’s story, visit corasstory.com

Photos courtesy of Kristine Brite-McCormick

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Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

Social worker worried about her health, not her healthcare coverage

‘Courageous Katherine’ thrives on helping fellow heart patients

Busy mother couldn’t believe she was having a stroke, urges women to monitor health