Congenital Heart Defect Awareness Week: What Moms NEED to Know

When I was pregnant, I read constantly, all of the mainstream websites and books, not once did I read about congenital heart defects. Part of our mission is to empower moms with information to protect your babies.

I hope you’ll share this post with other moms, so that every mom is aware of congenital heart defects and how she can protect her newborn. First some background.

What are congenital heart defects?

Abbreviated CHD, it’s a group of birth defects. There are over 35 known types, that range in severity. Basically the baby is born with a heart that is defected, or not right anatomically.

Can this happen to my baby?

I wish I could lie and say no, but CHD happens in any family, regardless of race, genetics and class. It’s happened to world class athletes–Arnold Schwarzenegger and Shaun White both have CHDs. Parents to “heart babies” include Katherine Heigl and athletes like Greg Olsen.

Is it common?

In the world of scary medical stuff that can happen to your baby, it is common. CHD happens in about 1 in 100 babies, which means it’s the most common birth defect. It’s more common than conditions like childhood cancer, Down’s Syndrome, and about as common as autism.

Okay, you’ve scared me out of my mind, what can I do?

First, I’m sorry. I wish that babies weren’t born with heart defects. I wish it didn’t matter if you knew. But truth is, your knowing can mean a huge difference for your baby. Something I’ve learned through giving birth to a child with a heart defect is that we as parents aren’t passive in their health care, we have to become their main health care advocate. I know most of you probably already knew that first hand, but as a first time mom, I assumed the doctors would “tell me everything I needed to know.”

If you’re baby is one of the 1 in 100 babies, know support is out there for you, and as I mentioned earlier, babies with CHD can live long, healthy lives (and even become Olympians!) with treatment.

Here’s what moms need to know about congenital heart defects:

1. The “gender ultrasound” is also the heart ultrasound.

The mid-pregnancy ultrasound is an exciting time. You might be anxious to learn the sex of your unborn baby, but try to hold in that excitement until the end of your appointment. Did you know that not all ultrasounds are performed equally? The training of the technician, the views the tech gets and other conditions make it easier or harder to see heart defects. You can help!

The earlier a CHD is found, the better the chance your baby has of thriving.

Ask your technician these questions, keeping in mind some techs might tell you they can’t answer, but you can still ask them to take a closer look at the following:

  • Do you see four chambers in the baby’s heart?
  • Are there two upper chambers (left and right atria) with valves controlling blood flow into the heart?
  •  Are there two lower chambers (left and right ventricles) with valves controlling blood flow out to the body (aortic) and lungs (pulmonary)?
  •  Do the two valves and vessels (aorta and pulmonary arteries) exit the heart in a crossing fashion?
  • Are the walls between the lower chambers of the heart intact?
  • Is the baby’s heart normal?

Questions are from this PDF print off from Children’s Hospital Boston. 

2. Ask about pulse oximetry screening when your baby is born.

Nov30

It’s recommended by the federal government, the American Heart Association, March of Dimes, American Academy of Pediatrics and mandated in eight states, yet not every baby is being screened.

Only about half of defects are found before birth. And, some babies have no symptoms, not even a murmur.

Pulse oximetry screening (also called CCHD screening or newborn heart defect screening) is a simple screening that is non-invasive, cheap and doesn’t have to interrupt important bonding time.

Remember, pulse ox doesn’t find all heart defects, it closes a huge diagnostic gap, but moms still need to be vigilant.

You can read all about it, and print off a paper to pack in your hospital bag, at Baby Heart Screening. 

This year, The Baby Ladies have partnered with Save Babies Through Screening Foundation for our “Blogger Baby Shower” in July. Let us know if you are pregnant and will be in Chicago this July, we’d love to see you there!

You can also find more information about pulse ox screening on the SBTS web site and Facebook page. 

3. Know the signs of a heart defect in a newborn. Think HEART. 

Memorize these signs:

Heart rate: too fast or slow? (normally 100 to 160 beats per minute)

Energy & Feeding: sleepy, quiet, floppy, too tired to feed or falling asleep during feeds?

Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour may mean that not enough oxygenated, red blood is getting to the body (normal oxygen saturations are 95-100%)

Respiration: breathing too fast or slow? (normally 40-60 breaths per minute)

Temperature: cold to touch – particularly hands and feet?

CHD symptoms

 I hope you’ll share this post, and file it away for reference. Three steps parents can take to protect their baby’s heart.

I’m not a doctor, just a mom that lost a baby to undetected congenital heart defects sharing the medical resources I’ve complied. Read more about my daughter, Cora, at Cora’s Story. 

February 7 to 14 is Congenital Heart Defect Awareness Week. 

Please help save babies! Share!

Kristine gave birth to her first baby November 30, 2009 after a healthy and normal pregnancy. Five days later her daughter, Cora, died suddenly and unexpectedly from an undiagnosed congenital heart defect. Now she's passionate about helping moms and babies. She blogs at Cora's Story, http://www.corasstory.com.

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Comments

  1. Hi
    It is wonderful how you guys are spreading awareness. I wish I got this information before had my daughter. My daughter was born the end of 2010 and we did not know she had CHD and we did not find out until the day after she was born. She was lucky that find out and we her blessed to have her. She was born with HLHS and now she is Heart transplant. If I can be any help to anyone please let me know because I know how it feels to learn about something you never heard about before and be scared.

    • Thank you for sharing your daughter’s story. <3 We’re passionate about this because one of the baby ladies (Kristine) found out about her baby’s CHD from the coroner. So glad that your daughter’s CHD was caught in the nick of time, even though I know it’s been a hard road.

  2. I wish I had a chance to read something like this before we found out we were expecting our son in 2011. We found out at our 20 week ultrasound that he had a VSD and possible other problems. We had to monitor him the entire second half of the pregnancy and we knew after he was born he would need surgery for the VSD, an interrupted aortic arch, & aortic stenosis. I think it helped us to know what to expect a little better. I never knew how common CHD’s actually were and I definitely did not know anything about them.

  3. Ii had a child with CHD. She was the light of my life. Ashley should have not made it to the age of one but my beautiful child lived to be 19. CHD is hard on the entire family. Ashley was born November 1991 her heart rate dropped at delivery so they took her by c section. The next day they took her to Miami children’s where a catheter was done Ashley had pulmonary atresia, VSD, tetroligy fallout and pulmonary hypertension. Ashley had her first open heart at 3 months. Ashley had 3 open hearts and 16 angioplasties. With Ashley knowing before would not have made a difference in my situation. I miss her everyday she was my hero. If I can help anyone through this don’t hesitate to ask you learn a lot in 19 years.

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