Congenital Heart Defects {Near and Dear to My Heart}

The Lucky Ones

Twelve years ago today, my third child was born.  It was as exciting and magical the third time around as it was the first and second.  Most of you already know that I'm a mom of three.  What you may not know is that my youngest child has a Congenital Heart Defect (CHD).  I write this post with his blessings. 

We were the lucky ones.  Lucky because we found out about his CHD just hours after his birth.  This meant that we had the power to monitor his condition, see the best specialists and help him grow into the awesome, smart, compassionate, intelligent and funny young man that he is.  He plays hockey, baseball, soccer, football and more.  Lucky, yes we are.

Cora's Story

Unfortunately, not everyone has a great outcome. Some parents leave the hospital without a clue that that their baby has a heart problem.  Sometimes, they are told by the coroner.  Such was the case for my friend, Kristine, whom I met through social media.  Her precious baby girl, Cora, graced her mommy and daddy's life for five days.  Her undiagnosed CHD took her life.  If certain newborn testing had taken place, Cora's story could have had a much happier ending.

Following is a guest post by Kristine Brite McCormick, Cora's mom:

Congenital Heart Defects: The Facts

About one in one hundred babies are born a congenital heart defect. The number doesn’t sound that large until you think about it some more. Think about your graduating class, mine had just over 200 people meaning statistically two had a heart defect. What about your dorm in college? Mine was gigantic. I’ll conservatively say it housed 500 people—five of them statistically had a heart problem they were born with.

Congenital heart defects vary in type and intensity. Even the same heart defect looks quite different in different people. I’ve heard a snowflake analogy used to describe the defects—each broken heart is like a snowflake, completely unique but similar to others.

My daughter’s heart was one of those unique hearts, but we didn’t know that until she was already dead. I was breastfeeding her early one morning when her little heart stopped. It was sudden and unexpected. We learned from the coroner that she had a congenital heart defect.

If you’re pregnant, you should be aware so you know to ask the ultrasound technician to make sure your baby has all four chambers and that the heart looks normal. You should also ask your pediatrician about a new recommendation from the American Academy of Pediatrics that says that every baby should be screened for heart defects at one day of life with pulse oximetry.

If you’re a mom, you should be aware so that you can watch your infant and child for signs of an undetected heart defect—such as tiring easily, turning blue or having trouble feeding. You should also ask about AEDs at your child’s school—especially if he or she is going to play sports. Yep, about half of the athletes that die suddenly on the field have an undiagnosed congenital heart defect.

If you’re not a mom or a caregiver, you should be aware so you can support those dealing with CHD in your community. Some of the patients have long hospitals stays, several surgeries and need lots of supports. Others never need surgery, but could certainly benefit from your understanding.

Awareness matters because it brings action.

Action brings change.

Maybe one day, if we all work together no mother will find out from the coroner her baby had a broken heart.

Better yet, maybe if we stand up and demand more research and funding, maybe one day no baby will be born with a broken heart.

If you’d like to learn more about Cora or Pulse Ox Screening, visit my websites at http://www.corasstory.org or http://www.pulseoxadvocacy.com.

Read Kristine's latest post: A Letter to Cora's Grandma, From Cora