by Kristine Brite McCormick
One moment newborn Cora happily nursed. The next she was dead.
Cora died suddenly of an undetected congenital heart defect. Cora's parents were astounded to learn that congenital heart defects are relatively common, and even more surprised to learn that Cora’s death might have been prevented with a simple test, memorization of CHD warning signs, and awareness of the most common birth defect before Cora's birth.
Reading about CHD is something every pregnant woman should take a few moments to do. Knowing the signs and symptoms and researching detection methods saves lives.
Some places, name CHD as the leading cause of death in infants. But, and this is a huge but, most CHD children live. In fact, medicine has improved outcomes for these patients so well, that more adults currently live with CHD than children. It's a hidden disability for these adult and children patients.
Over 35 different types of CHD are known, and each defect looks a bit different in each patient. So, each CHD heart is like a snowflake, no two alike. Chances are you know someone with a CHD. Some defects require nothing but an extra doctor's visit every few years, while some are more serious and require a series of surgeries. Often someone figures out that they or their child has a CHD after talking to me about Cora's story. They just weren't aware because the doctor never used the term "congenital heart" with them.
While we're on the subject, congenital heart means simply born with, so a person with CHD is always born with the issues.
The exact cause of CHD isn't known. There's a genetic link, but CHD can happen to anyone. For example, there's no known CHD background on either side of Cora's family.
Nothing detects congenital heart defects all the time. But, early detection improves outcomes. The defects can go undetected into adulthood.
There's not really a cure for CHD either. Surgery can mend the heart and medications can keep things under control.
This makes CHD even more scary. Awareness doesn't mean much unless there's a reason to make everyone aware. And, there are things that pregnant woman can do to reduce the odds of having a CHD baby, having a child go undetected, and picking up on the signs of a CHD.
Take a folic acid supplement. In fact, talk to your doctor about starting this before you're pregnant. There's a link to folic acid deficiency and CHD.
Don't smoke even if you're thinking about getting pregnant. Quitting when you find out isn't really an option. The heart develops early in pregnancy.
You know the ultrasound? The big one around 20 weeks where you find out if you're having a boy or girl? It's also to look at the baby's development. Ask your ultrasound technician about the heart and if all chambers are present.
Ultrasounds, fetal echos, and doctor suspicion after noticing irregular in utero heart rates all lead to detection. But, many defects aren't found until later.
Ask if the doctors or nurses hear a murmur. A murmur often occurs and can be harmless, but can signal something else.
Request your child be screened with pulse oximetry after 24 hours of life. Your baby should be calmed and anything below a 95 might signal a need for extra testing. Talk to your doctor about adding the pulse oximetry in while your child is at the hospital. Some hospitals routinely use this simple, cheap, noninvasive test, but others don't. This easy test saves lives. Ask for it.
Memorize warnings signs of a possible congenital heart defect. In a newborn, dusky coloring, turning blue, trouble feeding, rapid breathing, sweating along the forehead, and tiring easily are warning signs. Report any symptoms to a doctor and request an examination.
Kristine Brite McCormick entered the congenital heart defect community suddenly when she learned her daughter died of a CHD. She started Cora's Story, a grass roots effort to make sure every mother is aware of the most common birth defect. Click here to read more about Cora's Story.
Copyright © Kristine Brite McCormick. Permission to republish granted to Pregnancy.org, LLC.