You never expect anything bad to happen to you or your children. You hear of terrible things happening to other people and think something like that will never happen to you – until it does. When we received our son’s CHD diagnosis I realized we were stepping into one of those stories. That terrible thing that I never thought would happen to us DID, and I was about to experience the most gut-wrenching, soul-crushing journey any parent can take on this planet.
We found out we were pregnant with our second child shortly after our first child turned one. We were excited, and my pregnancy started out pretty normal and standard. We had toyed around with the idea of moving for weeks, and after a couple of months of pregnancy decided it was time. The stars aligned and we ended up buying a house right across the street from my parents on a short private road.
We moved into our new home at the end of October. Within the first three weeks of moving in, we decided to lay down new flooring and then paint the kitchen cabinets. I was also due to go in for my 20-week anatomy scan. No big deal. Our first child was happy and healthy and pregnancy with her was normal. We’ll just go in for our standard scan, see our little boy (we had already found out the gender), bring home some pictures to show everyone, and move on.
The Day Our Baby Became a Heart Warrior
As the ultrasound tech performed our scan I remember having just the smallest feeling that she was a little quiet during the second half, but I quickly brushed it off and didn´t say anything to my husband as we waited to see the doctor. Then the doctor came in and confirmed my suspicions. She told us that his heart looked a little funny and they just couldn’t get a good picture of it because they couldn’t get him to move. She wanted us to go to maternal-fetal medicine where they had better equipment and they would be able to get a better picture. She was very good at reassuring us not to worry – that she was sure everything was totally fine and they would just be able to get better images.
I wanted to believe that everything was in fact okay. That’s what we kept telling our family – they just want to get a better image but everything is fine. The seed of doubt was already planted though, and during that two-week wait for a second ultrasound, my fear grew. My husband and I didn’t really discuss it. I think we were both putting on a brave face for each other.
The day came for our second ultrasound. I tried to remain very positive, but this time I only focused on the ultrasound tech. As soon as she got to the second half of the body and specifically the heart, I knew without a shadow of a doubt she was much quieter and very concentrated. I once again didn’t say anything to my husband as we waited for the tech to enter the information into the system. She had said it would be just about fifteen minutes to get everything put in and then the doctor would be in to speak to us. Those fifteen minutes came and went. Then five more. Then ten more. Then fifteen more.
When the doctor came in she had three other people with her, which immediately stood out. She then said she wanted to take another look, and my heart started pounding. I will never forget her saying, “Do you understand why you’re here today?”, and my response being, “My OB just said they couldn’t get a good picture of his heart but now you’re making me nervous”. After maybe a minute of looking at the screen she said she would like to move to a conference room to speak to us. My heart dropped.
In a huge conference room with just me, my husband, the doctor, and one other person, she proceeded to pull out a piece of paper with some pictures on it and tell us she was afraid our baby had something called HLHS – hypoplastic left heart syndrome, a congenital heart defect. I immediately went into panic mode. I tried so hard to listen to everything she was telling us but my heart was pounding in my ears and I was doing everything I could to not lose it. My husband and I were holding hands under the table and our grip just got tighter and tighter. I finally lost it. When I was able to regain my composure I naively asked if it was something that could resolve itself. I had never heard of anything like this. Looking back, I now realize how desperate that question was.
Please don’t tell me something bad is happening to my baby.
HLHS is a congenital heart defect, meaning present at birth. The left ventricle is underdeveloped, so normal blood flow is restricted. This also means the bottom left chamber of his heart had filled with scar tissue from little to no blood flow. While in utero, babies are okay because the mother’s placenta is providing all the oxygen the baby needs. 1 in 3,841 babies are born with HLHS in the United States each year.
After being told we would be referred to our children’s hospital to confirm everything, they let us out a back way so we wouldn’t have to go through the waiting room. I didn’t even make it out of the building before losing it all over again and I cried the whole drive back to work. I couldn’t comprehend why something like this was happening to us. I immediately started wondering what the rest of pregnancy with a CHD diagnosis would look like. I was afraid of what our future would entail – and little did I know my biggest fear would come true.
It made me hyper-aware of the fact that we walk around every day and have absolutely no clue what other people are going through. I had to go back to work and barely finish the day. I had to come home to a house that was in disaster mode and talk to the contractor who was painting our kitchen cabinets. I was just told the most devastating news I had ever gotten in my life thus far, yet everyone else was just going about their business. The other thing I was hyper-aware of: I knew our lives had just dramatically changed forever.