What
What Will the Rest of My Pregnancy Look Like?
When our baby was diagnosed with HLHS at our 20-week anatomy scan, the next question was, “What now?”. I had no idea what the rest of my pregnancy would look like with a CHD diagnosis. No doubt there was a wide range of emotions that I had to learn how to deal with as I experienced them, but there was also the practical side. How would the rest of my pregnancy and day of birth look now that I have received this life-altering news?
I knew the rest of my pregnancy was going to be far from normal. This is just my personal experience with our CHD diagnosis. Other CHD diagnoses might have different protocols and look different, but hopefully, it can give you some insight as to things you might encounter throughout the remainder of your pregnancy.
Echocardiograms
Lots and lots of fetal echocardiograms. I honestly couldn’t tell you how many of these we had because I lost count. Especially towards the end, you will feel like all you are doing is going to the doctor because you will be going for these scans as well as seeing your regular OB-GYN. When we got the initial diagnosis at maternal-fetal medicine, we were then referred to Riley Children’s Hospital to get the official diagnosis. There they confirmed that our baby did indeed have HLHS.
Fetal echocardiograms usually take anywhere between 30 minutes to an hour, and they only focus on the baby’s heart to see how it continues to develop. They might do a very quick look over at the rest of the body and get you some pictures printed out (we have SO many ultrasound photos from that pregnancy).
Genetic Counseling
During one of our first visits to Riley, we had a meeting with genetics. Even though HLHS is not genetic, this is still typical protocol. They asked about both sides of the family all the way down to cousins. If you have a diagnosis like this, I would recommend sitting down with your parents and asking about your family history as soon as possible so you have that information with you when you go. There were a couple of things we knew about family members, but didn’t know the names of diseases/conditions, and had to find out that information so that we could bring it back to our next appointment.
Meetings
In the weeks leading up to your due date, you will be meeting with a lot of the groups that will come and visit you during your hospital stay. It is difficult for me to remember all the people we met with or all of their official names because that part seems so long ago, and we got a ton of information thrown our way.
One group I remember meeting with was Child Life Services. If you have other children at home, they will talk to you a lot about how to help your other children feel included in your new normal and the life of your heart warrior. This was especially hard for us because of COVID. There were still many restrictions placed at the hospital, and we knew once our son was born it was only parents allowed in his room.
Other groups came and talked to us about insurance and different programs that our son might qualify for. We were also informed about the Ronald McDonald house and the possibility of getting in there. All in all, you will meet with many groups before the birth of your child.
Fetal MRI
During one of my last visits for a fetal echo, I also had to have a fetal MRI performed. This is performed just like an MRI would be performed on you, but they are only taking images of the baby. I had had an MRI performed on me before and it didn’t bother me, but I will say this one was a little tougher to get through.
I was probably 38 weeks pregnant and had to lie on my back for an hour in a tiny space. Lying on my back didn’t feel good anymore so I was uncomfortable the whole time (I obviously could have asked for a break at any time), and I remember multiple times I would have to hold my breath for 15 seconds so they could get a good image. That felt extremely difficult to do when I had my huge belly pushing up toward my lungs. It was just an uncomfortable experience all around.
NSTs
From 36 weeks on, I had to go twice a week to my OB’s office to get 30-minute NSTs done (nonstress tests). A couple of heart monitors are hooked to your belly and monitor your baby’s heart rate. I also had to push a button any time I felt him move or kick. They looked for a certain number of kicks within that time frame. There was only one visit where they weren’t thrilled with his movement and I had to stay a little bit longer, but other than that all the tests were fine. If anything were concerning they would have ordered another fetal echo at our children’s hospital.
Induction
Pregnancy with a CHD diagnosis means you will be induced. You cannot risk going into labor on your own and not making it to the hospital on time, because your baby will need immediate NICU attention. To talk about my induction and what the day of birth would look like we had one final meeting. We were in a big conference room, and if memory serves me correctly there were about 8 or 9 other people in the room plus one person on a Zoom call. Each person went around and explained who they were and their role in my labor and delivery.
We talked about how I would be induced according to my dilation and effacement upon arrival and what day induction would take place. A person from the NICU team spoke to us about what they would do once our baby was born as well. I honestly do not remember a whole lot from that meeting. I think I was the most surprised at the fact that my induction would be so late. I was being induced only two days before my due date which I thought was cutting it kind of close, but as I mentioned in my second birth story, I wasn’t even the slightest bit dilated come induction day!
The journey leading up to our son’s birth was definitely tiring. It felt like we were constantly going to appointments. We were even given an itinerary for a couple of our appointments at Riley because we had multiple things to do in one day. As I mentioned, I’m sure not everyone’s pregnancies will look like this, but hopefully, this helps you prepare for some things that might come your way. If you experienced anything else leading up to your delivery with your heart warrior I would love to hear about it!