Mayo Clinic of Rochester in our “backyard,” and we are fortunate for that. Our first big day of high-risk pregnancy appointments the day after Thanksgiving, November 23, 2018. The time between our initial ultrasound and these high-risk pregnancy appointments weren’t as agonizing as I was expecting it to be.
I tried not to focus too much on the negative, which was that it was something severe. Instead, I was holding onto the hope that the first Doctor was right. Hopefully, the baby was “normal.” Had I not done that, I do not know how I ever would have made it through that time. I said so many prayers during that time that it was true.
Now, the first time you go to a clinic of this size, it is so overwhelming. Not only is the clinic massive, but Mayo is a melting pot. There were people from all over the world there! Thankfully there were volunteers, employees, and “seasoned” patients at every corner willing to help direct you.
The first high-risk appointment of the day was the Echocardiogram, ECHO for short. I had no idea what an ECHO was or what to expect. What we found out was that it was an ultrasound of the heart.
I have very watery eyes sometimes. On this day, of course, one of my eyes kept watering for no apparent reason, and they kept asking me if I was ok. I am sure to this day, they thought I was trying to keep my sobbing to myself! Anyways, the ECHOs take quite a long time due to the number of pictures they take looking from different angles, blood flow, and measurements.
After the Tech finished up, she let us know the Doctor would be in soon to talk with us. Then, after about a half-hour, a cardiologist came into me with us. He told us the news I was hoping not to get, the baby still definitely had a heart defect. We still had a lot of time left in the pregnancy and things could change. Although unlikely, something could change – better or worse.
He proceeded to tell us that the baby had Tricuspid Atresia.
Tricuspid Atresia falls under the umbrella of Hypoplastic Right Heart Syndrome. Hypoplastic Right Heart Syndrome isn’t actually a thing, but rather it includes several right heart defects. He went on to explain that if he had to choose between Hypoplastic Left Heart Syndrome and Hypoplastic Right Heart Syndrome, he would probably choose the right side of the heart.
Neither situation is EVER ideal, they each come with their own risks, but the right side of the doesn’t have as much responsibility as the left. The right-side pumps to the lungs, the left pumps to the whole body, which means it can put so much more strain on the heart. There are three operations that are involved with this heart condition under normal conditions. The Doctor told us about the series:
- The first surgery would be the only surgery baby would be lucky enough to escape. Still, the baby would probably need one of the other two operations. The baby would either need a Pulmonary Banding Surgery or an Artery Shunt Surgery. According to this Cardiologist, if the baby needed surgery, the banding would be the way to go. It looked like our baby would maybe need the banding, but it was still way too early to tell.
- The Bidirectional Glenn procedure would be the next surgery around the 4 – 6 month age range.
- Lastly, there is the Fontan. This surgery typically takes place sometime before the child is in kindergarten.
For a better explanation of these surgeries, Mott’s in Michigan has it very well laid out with pictures here.
For the rest of the day, it was a rush of appointments, standard with a high-risk pregnancy. We had another ultrasound (where we got 3-D pictures!!), met with someone in Genetics, a High-Risk OB, and a social worker. The surgeon was the last person we were going to be meeting for the day.
When we meet with Genetics, we just went over our family trees. I had previously interviewed both sides of the families to see what kind of health problems were out there.
With Genetics, we talked about other potential defects the baby would maybe have. There were options on tests we could have done after the baby was born and talked about if we thought any of them were necessary. Jeremy and I both felt that it would be what it would be. It was in God’s hands.
The OB, Ultrasound, and Social Work appointments pretty much all ran together. Nothing too exciting was talked about at any of these appointments, thank goodness! Our brains were full by this time.
Most of the things that happened at these high-risk pregnancy appointments were what you would expect. The OB included weight, blood pressure, and all the questions. The ultrasound appointments were checking for the baby’s growth along with some fun pictures for us when the baby would cooperate! Social work filled out paperwork with us so we could stay at the Ronald McDonald House after the baby came if needed.
Then we had to meet with the surgeon. We waited. We waited longer. Then we waited longer! This lady was getting hangry! Finally, we decided we weren’t going to wait anymore.
I mean, why wait forever just to shake hands and be done?! That had been how most of the day had been. We left and decided we would meet with him later if need be. (Looking back, we were so wrong)
There were three things that I remember about this day of appointments. The first being, almost every Doctor commented on our calmness about the situation. Do not get me wrong, this was a hard situation, but we knew it was in God’s hands.
The second was the ECHO appointment. This is where we learned that baby for sure did have a heart defect, and it was a severe one. We were naïve enough to think our lives were going to change, but not as much as some people thought.
Lastly, doctors have to offer you the opportunity to abort the baby, several times in fact. We had previously had this conversation and had decided that even if our baby only lived for a few hours, we were going to go through with it. Everyone has had a reason to come in the world, and it seems like the shorter their lives, the more significant the impact.
I have always been an impatient person, but this was the beginning of a change for me. Have you been through something like that before? Was it stressful, or were you able to cope with it pretty well? Did you have to do stuff to pass the time?
Check out the beginning of our story here!