Our lives are about to get very busy! On the 21st of September we had an appointment with a maternal-fetal medicine specialist. The midwife wanted us to go get a second look at Nolan’s heart. I went in thinking the doctor was just going to tell us there was a calcification on his heart and most likely it would go away. The worst thing that I thought they could tell us was that he had a hole in his heart which would need to be fixed. I was prepared for these things and I was okay with them. We went in and she looked at his heart and said she didn’t see what the midwife was seeing!! GREAT! Then she said she was concerned with something else… The left side of his heart looked smaller than it should and she was worried Nolan might have Hypoplastic Left Heart Syndrome. She didn’t go into much detail because she wanted to send us to a pediatric cardiologist for a fetal echo just to make sure. So I googled and I didn’t like what I was reading. I cried a lot.
By the time the fetal echo came I was prepared to hear that the MFM was right. Don’t get me wrong, every part of me wanted the cardiologist to tell us that there was nothing wrong. The closer we got to the appointment the more I got my hopes up that everything would be okay. But I was prepared. While we were getting the echo done I knew what the cardiologist was going to say. Sure enough she came in and told us that she agreed, Nolan had HLHS. Then she went into a TON of detail of what this meant.
The left side of Nolan’s heart didn’t develop properly. The mitral valve isn’t pumping and even if it was the left ventricle is so small it wouldn’t matter. The aorta is too small to receive blood so his heart can’t pump blood to his body. While he’s in the womb he’s fine. His heart functions differently in there so he handles pregnancy well. Shortly after he’s born is when he’d begin to have problems. This is when the business begins.
My original birth plan was a water birth in a birthing center. I will now be delivering in a hospital with a doctor and no water! Shortly after Nolan is born (after Johnny and I get to hug and kiss him) he will be taken to the children’s hospital across the street. Within three or four days after birth he will undergo his first open-heart surgery. Before his surgery he’ll be taking prostaglandins to keep his heart functioning as a fetal heart. He could potentially be in the hospital for up to 6 weeks depending on how things go. Then we’ll get to bring him home and at home we’ll be monitoring his weight and pulse ox at home. Around 3 or 4 months he’ll need a second surgery. After that surgery he should only be in the hospital about 2 weeks, at the most. Then, at around 3 years old he will have his third and final “major” surgery. (He could need smaller surgeries in between.)
Back in the 70s and 80s a baby born with this would usually die within the first couple of weeks because their heart didn’t work like it needed to. Luckily, a doctor came up with a procedure that could give these babies a better quality of life and a longer life. I am so thankful this doctor figured it out! There are people living with this defect that are in their 30s and 40s!!!
Now, there is a possibility that later in life Nolan could need a heart transplant. That’s not uncommon with these kids. However, who knows how far medicine will have come by the time Nolan is in his 30s. There’s also a possibility he might have some learning disabilities due to being blue. (CHD babies will often turn blue at least once in their life and this could cause neurological issues.)
Everything else with Nolan is looking good. Doctors aren’t concerned about any more issues. Everything with me looks good and as long as I can go into labor before 39 weeks I won’t have to be induced!!! I don’t want to go into labor too early because we want Nolan to have a good birth weight, so I’m thinking 37-38 weeks sounds good. I REALLY don’t want to be induced.
We have an appointment with the surgeon who will be doing all of Nolan’s surgeries on November 11. I will have to go in for monthly fetal echos to make sure nothing else is going on. I will be seeing my OB every two weeks until the 32nd week, then I’ll be going once a week for non-stress tests. Johnny and I are ready to do whatever we have to for this little boy!
We would appreciate a lot of prayer. We’re both terrified because this is not something we ever expected. Please be praying for continued health for Nolan and I. Pray for peace and strength during this time. We also will have a lot of expenses with all the surgeries and hospital stays so please be praying for help as we try to figure out how to make this work.
We have been very thankful for all the support from family and friends. We’re very fortunate to have the people in our lives that we do who encourage us in these difficult times. We’re also very thankful for all the people who love Nolan so much already.
And lastly, I never really saw what the doctors were looking at when they’d tell us that he was boy. But at my last appointment I saw clear as day… The OB said he was showing off. 🙂
If you want to know more about HLHS you can go to:
There’s also a short video series on YouTube from CHOP that explains HLHS. The link will take you to the first video and each video after should automatically play.
And here’s a video explaining each surgery and its purpose.