Must Knows to Protect Your Seemingly Heart-Healthy Child from Undiagnosed Congenital Heart Problems

I've been asked quite a bit this week about how someone with children over a few weeks old can get their child's heart checked. I focus on screening within the first few days of life, because that's what would have helped Cora.

This week, I've been asked quite a few times because sadly the online community has been rocked by the sudden death of more than one child over a few weeks old from an undetected CHD.

I'm not a doctor. This isn't medical advice. I don't have the answer about how we can protect your children. Your doctor might tell you it's rare, and not to worry about it. But, when you read about children suddenly dying, whether athletes  in high school or babies a few weeks old, you can't help but realize your definition of rare and your doctor's definition might be different. Before I went to surgery for my gall bladder, my doctor told me he was 75 percent sure it would fix the issue. I grew a bit hysterical on another doctor and demanded answers. He told me that they viewed 75 percent as a huge success. That day I learned that when your the patient, or mom, your definition of success, or rare, might be quite different than your care takers.

Know Your Family History

So what can you do to make sure your child's heart is properly functioning? Again, please, please remember I'm not a doctor. I'm going to tell you what I, as a mom, would do in your situation, with children that you believe to be heart healthy.

I'd ask my parents about heart issues in our family. I'd jot down anything that sounded like a congenital problem. If someone in my family died suddenly at a young age, I'd write that down too. I'd ask my husband about his family. I'd ask my husband's parents, and write everything down.

If there was evidence of heart problems that seemed congenital, or present from birth, in any of my child's relatives, I'd go to the pediatrician and tell her about it. I'd ask her if she'd consider ordering testing of my child's heart based on the family's history. This testing might be an echo or EKG.

If my family was absent of these problems (which my family IS), I'd realize that heart problems, while sometimes genetic, are often not genetic.

Learn the Signs of a Heart Problem


I'd read the signs and symptoms of a heart defect and think about them carefully. I'd report any of them present in my child to my doctor. I wouldn't feel silly for doing so, even if my pediatrician brushed it off. If I got the feeling that something wasn't right with my child, I'd push the issue.

Here is a great list of the signs and symptoms of CHD, courtesy of the Congenital Heart Information Network:

"Parents should be alert to the following symptoms in infancy:

• Tires easily during feeding (i.e. falls asleep before feeding finishes
• Sweating around the head, especially during feeding
• Fast breathing when at rest or sleeping
• Pale or bluish skin color
• Poor weight gain
• Sleeps a lot - not playful or curious for any length of time
• Puffy face, hands, and/or feet
• Often irritable, difficult to console

Some children with CHDs may not have any symptoms until later in childhood. Things to look for include:

• Gets out of breath during play
• Difficulty "keeping up" with playmates
• Tires easily/sleeps a lot
• Change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
• Frequent colds and respiratory illnesses
• Slow growth and weight gain/poor appetite
• Complains of chest pain and/or heart pounding

If your child has two or more of these symptoms, talk to your pediatrician about a referral to a Pediatric Cardiologist."

Protect Your Athlete

If my child was an athlete, I'd demand that my school have an AED nearby for all practices and sporting events.  I'd ask my doctor about screening my athlete for heart problems.

Pregnancy and After Birth

I'd be remiss if I didn't at least mention what I'd do during pregnancy and the early days.  I'd take folic acid supplements, or prenatal vitamins before getting pregnant. When I have another child (and if I don't live in Indiana still, where soon every baby will be given the screening), I'd ask my doctor to screen my baby for heart defects in the hospital with pulse oximetry. Since Cora had a CHD, I'll make sure that I have a fetal echo during future pregnancies. At my mid-pregnancy ultrasound, I'll bring this document. 

I'd be determined not to live in fear. Not to hold my child back, and to enjoy life despite it all. But, I'd be so thankful for having the information in front of me, and would read everything I could.

Help Save Lives

Please pass this on to mothers, fathers, grandparents and caregivers. You might just help save a life. 

About 1 in 100 babies are born with a congenital heart defect. Only half of those are detected before birth. Sometimes these problems can go undetected until adulthood. Sometimes, these problems are detected only after death, by the coroner. That's what happened to my daughter, and too many other children. I'm determined to make it end. No mother should find out about her child's congenital heart problem from the coroner.