Congenital heart defects… they happen to other people’s kids. Not mine. At least that’s what I thought.
Before Olive’s diagnosis, I had never even heard of congenital heart defects. I didn’t realize that so many children have heart defects. 1 in 100! In the fall of 2014, we were so excited to be welcoming a baby girl to our family of 3 boys! We went for her 20 week ultrasound and everything seemed perfect! We left that day overwhelmed at the thought of trying to fit PINK into a house full of cars and trucks and every other toy boys love to play with. Just a few weeks later, my doctors office called to tell me they needed me to have a second ultrasound. Deep down I knew something wasn’t right even though I wasn’t willing to admit it yet.
At 28 weeks gestation, we went to Vanderbilt for a follow up ultrasound. It was a long ultrasound, and the whole time I kept asking the ultrasound tech to tell me what she saw (which of course she couldn’t and kept telling me that the doctor would explain everything). When we met with the doctor, he informed us that our sweet girl had a coarticulation of the aorta. He told us she would require surgery after birth. I couldn’t stop the tears. What did this mean? How could this be happening? It felt like a bad dream! He set us up for an appointment with a pediatric cardiologist for 3 weeks later. Those 3 weeks were hard, but after much prayer and my husband’s reassurance, I was starting to accept what was about to happen and was feeling at peace that my Heavenly Father was going to bring my baby girl through this.
Then came the appointment day. My husband was working, so, not fearing any more bad news, I had a friend go with me to the appointment. I had another extensive ultrasound to look at my sweet baby’s heart, and afterwards met with the cardiologist. She sat myself and my friend down. She told me that my baby’s left side of the heart was measuring small and that it was indicative of hypoplastic left heart syndrome. She proceeded to explain what that was and the outcomes. She told me about a condition that baby girls can sometimes have called Turner’s Syndrome, and that if my sweet girl had it, the likelihood of survival was slim. Here I was, having to decide before even meeting my baby if I would put her through surgery and fight, or if I would take her home to be surrounded by those she loved as she passed.
My head was spinning. My heart was broken. I didn’t know what to think or feel at that moment. I was numb. It’s a roller coaster from literally one second to the next. I went home that night and just sobbed and sobbed. How could my perfect, healthy, beautiful baby girl be sick? She was moving and kicking. My pregnancy was no different from my other 3 previous pregnancies. This just couldn’t be happening. As the weeks and the many doctors visits followed, it was hard. Friends tried to comfort me, but at that moment there is nothing you can say or do to bring comfort. We prayed A LOT and asked our community for prayers.
A week before Olive’s delivery date, we met with a new cardiologist, in hopes to get more answers as to our baby girl’s diagnosis. After a long ultrasound, the cardiologist came and spoke with us. She told us that our daughter’s left side of her heart was small, but she believed it would be big enough to do its job. She still had a severely narrow aortic arch that would require reconstruction after birth. We were cautiously optimistic, but so relieved at this new diagnosis. On delivery day, our daughter was born pink and healthy looking just like her big brother! I remember as they wheeled her out of the room thinking that they would bring her back shortly and tell me it was all a big misunderstanding and our girl was perfectly heart healthy!
After being examined by the cardiologist in the NICU, we were told that our daughter’s left side was going to be big enough and that she would just require the arch reconstruction. I cried with relief that my baby girl was going to be ok, but still was scared that the diagnosis of HLHS would creep up again. At 7 days old, I handed my sweet girl over to the surgeons. I felt numb. No tears, no falling apart. Just numb. My fellow heart mom, and now best friend, was at the hospital as her baby underwent surgery, and without her I don’t think I could have gotten through that day.
After 5 long hours, the surgeon came and told us that everything was a success and our daughter was 80% out of the woods. We waited and waited, pacing hallways, to see our girl. 5 hours after talking to the surgeon at the completion of her surgery, we called back to find out how long before we would be able to see our daughter. The nurse told us it would be just a little longer. While sitting in the PCICU waiting room, we saw our surgeon leave the floor to go home. We waited a little longer and then, being anxious to be by our daughter’s side, we called again. This time, a nurse came out and said “Are you Olive’s parents?” At that very moment, we could see from behind us Olive’s surgeon was rushing back towards the PCICU. He stopped and said “You know that 20% I told you about? This is it.” And rushed back to where our daughter was.
The nurse then proceeded to tell us that our daughter’s chest tube had become blocked or clogged and blood was pooling in her chest putting pressure on her heart. I felt my whole body cold. How could this be happening? Finally at 1:00 a.m. the next morning we were able to go back and see our girl. Just seeing her, being beside her, was what I needed to finally feel a sense of peace. After a mostly uneventful post-op stay, our beautiful girl came home 9 days after her surgery. She has never missed a beat since! There are days that I think about everything we went through prior to her delivery, and it still brings me to tears. Those emotions, those feelings never leave you. But I see my healthy baby girl and I am reminded just how blessed and fortunate we are.
I know that God gave us a miracle with Olive. I wish this had never had to happen, but I wouldn’t trade what I learned for anything. I feel a deeper connection with my Savior than ever before. I have gained lifelong friendships and met some of the strongest children you will ever meet fighting big battles! Before Olive’s diagnosis, I had never heard of congenital heart defects (CHDs). I didn’t know just how many lives were affected by them. Now, it’s all I ever think about. I am thankful for organizations like Project Heart, that are raising awareness to congenital heart defects and supporting funding for research and early detection and treatments for CHDs.