Tricuspid Atresia occurs in 1 in 10,000 live births. I guess that means we are the lucky few :)
When I found out my baby has TA, I was just 25 weeks into my pregnancy. Obviously, it was devastating. No one wants to find out their baby has a heart condition, especially not an "incurable" one. I scoured the internet looking for answers to my millions of questions. Here are my main takeaways:
1. No TA Baby is Alike
While having a baby with this condition is super rare, it's practically impossible to find someone who has exactly the same diagnosis. Our surgeon told us it's like saying "I have a car" and someone else says "I also have a car!" and that's about as close as it gets. It's never just tricuspid atresia. That's pretty much just the main title, followed by a bunch of sub-headings. For example, Jack has tricuspid atresia with a large VSD (ventrical septal defect). He was lucky in that he was more on the red side than blue side - meaning he was getting more oxygen than not enough. Your heart team will be ready for possible operations (a shunt or band), but it is on a wait-and-see basis until after the baby is born and they can monitor how the blood is going to and from the lungs, and to and from the body.
2. There are a Series of Surgeries for a Reason
At first I was upset and confused why they couldn't just put in a tricuspid valve. People get valve replacements, why is that not an option? Clearly, I am not a medical professional. They simply can't just pop in a valve where there wasn't one, that's not how it works. They need to reroute the returning blood altogether since it can't enter the heart to be pumped to the lungs. The reason for the Glenn and the Fontan aren't combined into one surgery, in layman's terms, it would be too overwhelming for a little baby. It would be too much oxygenated blood flow to the brain and body - they aren't used to those levels and it would be a shock to their system, which is why it's split up into two procedures. TLBs (tiny little babies) are top heavy. They don't walk and run and kick, and the bottom part of their body is pretty small compared to the top half. That is why the SVC (superior vena cava) is the first to be attached directly to the lungs during the Glenn procedure. Once the baby starts growing and walking and using their lower body more, the IVC (inferior vena cava) will then be attached to the lungs during the Fontan procedure. Your child's cardiologist will know when the timing is right because oxygen sats will start to dip below a comfortable range.
3. TA Girls Have it Harder
I belong to a TA Facebook group, and let me tell you, I admire the heck out of the women who have TA! They are strong mamas! TA women have to worry about blood thinners during that magical time of the month, plus making the decision (with their cardiologist ) if/when/how they will be able to have children. Getting pregnant and carrying a child full term is difficult enough, I can't imagine adding on the extra worry of how your heart will handle it all. I'm not saying this to scare expecting mamas out there, I'm just preparing you for the added complexity down the road. I'm also here to give super props to TA women and TA mamas of girls. You. Are. Amazing.
4. Your Child Will Lead a Normal Life
A congenital heart defect is not a death sentence. Yes there will be some restrictions, but a lot of kids have restrictions! Some are allergic to peanuts, and some have asthma. This will simply be the new normal for your family. We were told our son will be able to play sports like a "normal" kid, but he may not get to the elite level. We are not elite-level athletes and we don't have heart conditions, so why would his life be any different? We won't get him involved in rough contact sports, like football, but that probably wasn't going to happen anyways (I'm terrified of what concussions can do to your brain). The only really odd thing we need to keep an eye out for is making sure he has excellent dental hygiene. Poor dental hygiene leads to exposure to heart trouble.
5. You're About to Witness a Miracle
These little babies are truly incredible. Granted, it's all they know, but it's astonishing what they are capable of. Our little boy came home just 5 days after open-heart surgery and was a happy camper! He had some headaches but you would not have known what he's gone through just by looking at him and playing with him. Yes you need to be their advocate, and yes it's going to feel overwhelming to the max, but you are going to look at your smiling baby and you're going to feel a hope you've never experienced in your life.
Stay strong, moms & dads, you're going to get through this!
Baby Jack right before his Glenn procedure. 4 months old.