Congrats! The lines showed up and you are pregnant! You probably go through the turmoil of how to tell your significant other and then start to think about calling the doctor, changing your diet, and all the other things that go through a new mom-to-be’s head. You run out and pick up a pregnancy book to keep track of the little one growing inside of you and to make sure you are taking the right precautions on this nine-month journey. What you probably don’t know is that those books are missing a key fact about what could be going on with your baby!

I can tell you from experience this is true! Do you know the number one birth defect for our precious little ones? I didn’t until after I had my daughter. I read about the testing for Down syndrome and other chromosome defects, but nowhere does it talk about something you are more likely to encounter!

Do you know that 1 in 100 babies is born with a congenital heart defect (CHD)? Did you know that CHD takes twice the amount of children’s lives each year than all forms of childhood cancer? I didn’t! Not until the day the on-call pediatrician came in and told me they were flying my daughter to the nearest children’s hospital because there was something wrong with her heart. I wasn’t prepared and it wasn’t fair!

Transporting to Children's Hospital
Transporting to Children’s Hospital
NICU room before surgery
NICU room before surgery

My sweet Ellie had open-heart surgery at six days old to repair a ventricular septal defect (VSD) and a partial repair of her pulmonary valve. It was not an easy recovery. She had to have her chest reopened because her lungs could not handle the pressure with her chest closed and then they closed her chest again two days later. After handling that, we had issues with tachycardia spells. Her heart rate would shoot up into the two hundreds and then drop again. Medication helped us control her heart rate. Then we struggled with eating, we struggled a LONG time with eating! But my beautiful girl made the journey home at a month old. We were thrilled with such a short stay!

What The Pregnancy Books Don't Tell You Is Terrifying
First time getting to hold her at 4 days old before her heart catheterization.
What The Pregnancy Books Don't Tell You Is Terrifying
PICU room after surgery.

Now we are expecting a second little one come June and will be getting a fetal echocardiogram done to check heart function on this bundle of joy. I have seen the cardio team do multiple echocardiograms on my daughter and I am still amazed that they can perform one on sweet little babies before they make their appearance in this world! I am relieved to know we will have some answers before delivery this time around.

My Heart Hero! Photo taken by District 12 Studio Photography
My Heart Hero! Photo taken by District 12 Studio Photography

I wasn’t prepared for the possibility of having a baby with a congenital heart defect, but I want to change that for the next mom-to-be! The only way to do that is to spread awareness. Chances are with 1 in 100 babies; you know or love someone with a congenital heart defect. Do the job that the pregnancy books are lacking. Let mom’s know there is support out there and that they are not alone. It is a scary journey to be on by yourself. Your heart is being mended emotionally while your baby’s heart is being mended physically!

Congenital Heart Defect Facts

  • 1 in 100 babies is born with a CHD, it is the #1 birth defect worldwide
  • Some babies need surgery right away while others never do
  • CHD takes twice as many children’s lives each year than all forms of childhood cancer
  • There is no known cause for CHD, only 15-20% are caused by genetic conditions
  • In the United States a child is born with a heart defect every 15 minutes
  • Little research has been done on CHD
  • There is support out there nationally and locally: reach out to those in your community!

All these facts along with others can be found on the websites listed above.


Feature image taken by District 12 Studio Photography

Christy Margritz

Born and raised in central Nebraska, Christy lives in Kearney with her husband, daughter, son, and two dogs. She is a preschool teacher with a passion for worship. Some of Christy’s favorite things include singing, dancing, watching movies, or reading a good book. Most days you can find her dancing and singing with her daughter and son!