My Unborn Baby Was Just Diagnosed With a Congenital Heart Disease

A few days ago my husband and I experienced one of life’s redefining moments — the ones that divide time into two parts: before and after. I had a fetal echocardiogram done and our unborn baby girl was diagnosed at 24 weeks with the congenital heart disease Tetralogy of Fallot (TOF).

The diagnosis shattered our world and our hearts. It was unexpected and the last thing on our radar. We were still ecstatic after recently finding out our baby was a little girl. We went from being on top of the world, to quite frankly the lowest point we’ve ever been at as a family. This pregnancy has been high-risk and complicated since week 20 when we learned our baby’s limbs were measuring two weeks behind where they should be in comparison to the rest of her body. Since then, it’s been test after agonizing test trying to pinpoint what — if anything — was wrong with our precious baby girl.

The only silver lining at this point is now we know what she has, we can start educating ourselves about her disease and prepare our family for what’s to come.

We have yet to be able to tell all of our family or even our closest friends. I am so overcome with emotion — often falling asleep in tears and waking up the same way — that sometimes speaking about it out loud hurts too much. So, I decided to write this blog because there are a few things I wanted you to know.

1. I couldn’t tell you in person.

Writing has always been the easiest, most natural way for me to express my emotions, so forgive me for not telling you in person. I wish I had the strength to call everyone and explain what is going on, but at this moment my heart is too heavy. The information is so complex and wide-ranging. I am too scared, too anxious, too overwhelmed to think about the uncertainties.

2. The more we learn, the more we will share.

At this stage all we know indefinitely is our baby girl’s diagnosis is Tetralogy of Fallot, a disease that encompasses four heart defects and requires at least one open-heart surgery at birth or shortly after, plus lifelong treatment. In short, the defects mean her blood does not flow properly through her heart and does not carry enough oxygen to her body or blood to her lungs. Our baby has three of the four defects that make up TOF, including a hole between the lower chambers of her heart, an overriding aorta and a tiny, narrow pulmonary valve.

3. Please pray or send positivity to our baby warrior.

Her name is Nylah (NY-lah). We were saving her name to reveal at her birth, but decided to share it with you now so in your prayers you can speak her name, Nylah. We are praying very hard she will stay in my womb as long as possible because as our fetal cardiologist has said, a premature birth will only add to the complexity of Nylah’s fight once she is born.

4. Will she be OK?

We have asked ourselves that same question over and over throughout the course of the last few days. Every year TOF occurs in five of out of 10,000 babies and Nylah is one of them. While Tetralogy of Fallot is a disease our doctors have dealt with before, every case differs depending on the baby and her history. It’s really in God’s hands.

We know Nylah is OK while inside my womb because she gets her oxygen and nutrients through the placenta, but once she is born, her battle, and ours, will begin.

We know she’s a warrior, a fighter, because I feel her kicking and swirling around all day and all night long.

Going forward we are praying for Nylah to continue to develop and grow in my womb for as long as possible, that way when she is born, she has an incredible chance to thrive.


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