Baby Walenga's Heart

It’s been an interesting few weeks for us to say the least. We decided to start this blog as a result of some news that we’ve gotten about our baby recently and to share what’s going on with our family- baby related or not.

About 3 weeks ago, we went in for the “big” ultrasound. I was at 19 weeks and we were excited to see how our baby was growing and developing (like any parent!) It was amazing to see the arms and legs, hand and feet, spine, organs- the body is so complex and amazing! We had decided to keep the baby’s gender a surprise so we dutifully looked away when the ultrasound tech looked at “that” area (not that we would have known what we were seeing anyway). Baby W was measuring right on track as far as size and weight She tried multiple times to get a good view of the 4 chambers of the heart, but baby had settled down and wasn’t moving so it was difficult for her to get a good angle. My normal doctor was in delivery, so we met with a midwife to go over the results of the ultrasound. She brought up the fact that they couldn’t get the view of the heart that they’d like and recommended that we see a perinatologist (a doctor of maternal and fetal medicine- usually dealing with high risk pregnancies) just in case it could be something wrong with the baby’s heart. We were slightly concerned, but felt that everything was probably just fine and it was just the position of the baby. After all- the heartbeat had been normal at every appointment so far, so what could be wrong?

I went to the perinatologist last Monday (Gary wasn’t able to join me at this one) and they performed another full ultrasound. I got lots of pictures of the baby, which was very fun. The ultrasound tech sent the images to the perinatologist and went to check and see if he got enough views or if he wanted to take a look himself. A few minutes later the perinatologist returned and started to use the ultrasound machine to get a good look himself.. I was starting to get a little bit worried at this point. He ultimately told me that he was pretty sure something was seriously wrong with the baby’s heart. He told me that instead of 4 equal sized heart chambers, he was seeing was 2 larger than normal heart chambers, a very small 3^rd chamber and no 4^th heart chamber. He said that he couldn’t make a diagnosis, but was pretty sure that I’d likely have to deliver the baby in Denver and the baby would have to have surgery soon after birth. He said that we’d be able to get an actual diagnosis and plan of action from the Pediatric Cardiologist who we made an appointment with that Wednesday (2 days later). When I left the office, I was pretty shocked. We hadn’t had any indication that anything was wrong to this point. I had finally moved past the initial 1^st trimester worries and was even a little bit proud of myself that I hadn’t been so anxious about how the baby was doing.

We had even opted not to do any of the genetic or chromosal testing because we didn’t want to give ourselves extra reason to worry if we got a “false positive” on something. I had tried to keep the mentality (for my own sanity) that we had a healthy baby, and if something came up contrary to that, we would deal with it when it came. There is enough to worry about with a pregnancy and infant without adding to it. Well it looked like that mentality was pretty much shot. The next few days were very long for both of us. We cancelled our plans for those few nights to just spend some time together and try to wrap our minds around this. I felt like the thing that would bring me the most comfort was being as informed as possible. We did research about congenital heart defects in general, the specific defects, treatments etc. We just thought having at least some information when we went into the appointment with the pediatric cardiologist would help us to avoid the shell shock of what we might hear.

We were both pretty nervous going into the Wednesday appointment. He did a fetal echocardiagram (echo) and spent a lot of time looking at different angles, views and specific veins, arteries and valves before he talked to any of us about it. We didn’t know much of what we were looking at, so it was pretty quiet for a while. Despite the anxiety I was feeling, I was still amazed at how advanced medical technology is and how much detail can be seen by just holding a little wand up to my stomach. This was the 3^rd ultrasound, and at every one, the baby had been extremely active so they kept having to switch angles to get what they were looking for. After a long time of silence and looking at things that neither Gary nor I understood, he finally said he had seen everything he wanted to. He drew us a (pretty impressive) picture of a normal heart and then a picture of what our baby’s heart looked like. He confirmed what I had been told on Monday about what he was seeing in the chambers. He said the name of the defect was Tricuspid Atresia. This means that the tricuspid valve between the right atrium and right ventricle didn’t form properly. Since blood couldn’t flood through this value, the right ventricle didn’t form at all. The right ventricle is usually what pumps the blood into the lungs to be oxygenated so the blood isn’t making it into the lungs like it needs to. The treatment of this defect involves 3 surgeries over the first 3 years of life. He told us the first surgery would likely be within the first week after the baby was born, the 2^nd one would be at 6-12 months and the 3^rd one would be around 3 years. The goal of these 3 surgeries is to reroute the blood from flowing into the right side of the heart to passively flowing directly to the lungs. There are plenty of complications that can come up with each step in the process. From what we understand, the baby should be ok at least until birth because the oxygen is drawn from me instead of from his/her own lungs right now. He reassured us that there is no known cause for defects like these and that it wasn’t something that we did or didn’t do that would have caused this. He also said that it was very unlikely that there was a chromosomal abnormality that was linked to the heart defect because of the specific defect and since the baby was at a normal size. He didn’t even really recommend an amniocentesis so we were glad to hear that for now.

We had discussed after the appointment on Monday the possibility of changing our minds and finding out the gender. We figured that since we’ll have a lot of surprises and unknowns about our baby over the next few years, this could be something that we could know and hold onto. On Wednesday we asked them to tell us and we found out that it’s a BOY! With all the difficult news we received that day, it was so nice to have something happy to walk away with.

We’ve got a long few years ahead of us! Luckily we have heard great things about Denver Children’s Hospital so it seems like we’re in a good place to get the right treatment for our little boy. It’s amazing that even at 22 weeks (what I am now) that we can already know and prepare as much as possible for this complication. However, it’s also very difficult because there is literally nothing we can do to help our baby from now until birth except pray and put him in God’s hands. We know that this news is not a surprise to God and that he will provide for us in every way during each step of the journey.

We’ll use this blog to keep everyone posted on different things along the way. I promise, not all of the posts will be as long as this one J. We would appreciate your prayers along the way. We’ve both been kind of in pragmatic mode since hearing the diagnosis just trying to get information and to make decisions that we can make now as opposed to later. I’m not sure if it just hasn’t fully sunk in, if we’re still a little bit in shock, or if God’s just giving us peace right now. Until the baby is born, prayers that he continues to grow at a normal rate and that he reaches full term before birth. And for Gary and I, prayers that we’ll continue to have peace and that we’ll be able to trust God through the entire process, and that going through this will bring us closer together. I have no doubt that we’ll have a very tight knit family by the time this is all said and done!

- Allison