Tetralogy of Fallot: A Personal Journey Pt.1

So I’m not sure I’ve ever posted a truly personal blog on here. I don’t often feel compelled to write about myself, and I’m convinced that not many people would really care if I did write personal blogs. Sometimes I find them a little self-indulgent. The last few weeks, however, have proven to be pretty difficult in my personal life, and I decided I might as well share my journey in the off chance someone else is going through something similar and would find comfort in knowing that they’re not alone. I know I scour blogs, comment boards and threads just to know that I’m not.

This year my husband Scott and I have had a lot of changes in our life. He started working full time after being in graduate school for a bazillion, I mean three years. Shortly after, we found out that we were pregnant with our first child! When we found out, I didn’t really have the typical movie-ish reaction where it’s happy tears and celebrations. I started crying all right- and saying, what did we dooooo??? I’m way too selfish for this!!! After the initial shock wore off, it all became a lot more exciting.

A month later, we moved into our dream house, and we felt like we were on top of the world. We now totally live on ‘Leave-it-to-Beaver’ street. Every time I pull into our neighborhood, I feel like a bluebird could come sit on my shoulder and start singing to me. The moving process was a lot more stressful than I ever thought it would be. I seriously underestimated how much crap we accumulated, but in the back of my mind, I told myself how lucky I was for the house distraction while I was pregnant. Anxiety has been one of my weak points since I was little. It was nice to have a focus on something other than the millions of things that could go wrong with my pregnancy.

All was good until our 20 week ultrasound. The doctor came in and told us there was something wrong with our baby’s heart. If you have problems with anxiety, this news will probably hit you ten fold as strong as it would a normal person. I remember the world feeling like I was in a dream- as if people were there talking to me, but I wasn’t there. That feeling actually lasted for about a month straight, and I still go in-and-out of it sometimes. Tetralogy of Fallot was the diagnosis, and that is not one, but four congenital heart disorders that all occur simultaneously. The doctor then went on to explain that this could be caused by a chromosomal disorder called DiGeorge’s Syndrome, that would result in a lifetime worth of specialists and teams of people that would need to work with our child. It can include walking, talking, feeding problems, and among other things, major developmental issues and mental retardation. And that’s pretty much all I heard the doctor say- Mental Retardation. To find out the extent of the baby’s troubles, we decided to do an amino, which was no walk in the park but completely worth it.

Seven days passed. They were brutal, not knowing what the future had in store for us. The feeling of loss before you even get to experience the joy. A lot of really ugly thoughts passed through my mind that week. Having this diagnosis is pretty rare even though some people will tell you it’s common. I say the Flu is common. This is not. This is like winning the shittiest lottery.

On the seventh day, we received the phone call that made the world start spinning again- No DiGeorge’s Syndrome! I promised myself that if I received that phone call, I would go back to being the happy expectant mom-to-be. And I did, for about three days.

All of the feelings and fears started to simmer to the surface again. If our baby has Tetralogy, what else will he have? What did I do to cause the baby to have this? (The doctors say it’s just random and they don’t know what causes it in many cases, but you start to second guess everyone. Surely there is something that causes this). Was I eating enough good, organic food? I ate a lot of take-out junk my first trimester because of the move and lack of access to a kitchen. Will this give him autism? I convinced myself that I could “heal” our baby by eating more eggs, cutting out wheat, and eating fresh fruit and dark chocolate everyday. The rational part of my brain did a major leap off a tall cliff, and all of my fears and emotions made me feel like I was in a steep spiral downward, caught swimming upstream in the flushing of life’s toilet.

Our last ultrasound was on Tuesday, four days ago. I went into it praying that baby would have miraculously healed and the eggs I have been eating had worked. Of course, he (yes, it’s a boy!) still has his heart problems, and of course it’s ridiculous to think that eating eggs would help that…I’m not even sure where I got that idea. I think I made it up. It sounded promising. I have to mentally try to keep re-aligning my brain with the facts: The survival rates of having this are insanely great. He will definitely need one surgery, open-heart, possibly more. We are lucky this is a condition that will allow him to have a full and healthy life when fixed. He doesn’t have anything else wrong with him until diagnosed, so to put energy into that fear is worthless. When I do that worthless worrying, Scott tells me I’m in my rocking chair- I’m doing a lot of work and not going anywhere. It always makes me laugh. Well, more like snicker begrudgingly because I know he’s right.

We have three more months to go, and I can honestly say that the last few months have changed my life more than I ever thought was possible. I feel like I’ve aged about 5 years both mentally and physically. It’s been a good change, too. It’s been really rough sometimes, but I feel a lot stronger from it. I’m excited to meet our little man, and document his spectacular life. It will be hard not to spoil him given how lucky we will feel each and everyday he is with us.

In our ultrasound earlier this week, we were given the best gift ever! A small video of him sucking his thumb. His little nose is too cute and seeing it It made all the fears melt away… for this week at least.

I will continue to update this journal of his early life as we go through this experience. We are so thankful we found out early so that we’ve had time to process what will be happening as we move forward into the unknown. My wish is that in two years, I’ll look back on these posts and find comfort in knowing that all turned out well, and that our child will be able to experience a life filled with joy and love. I have a new appreciation for any parents who have gone through something happening to your child. You are the bravest people in the world!

Thank you so much to my closest friends and all the people, doctors and nurses who have been more than amazing! An even bigger thank you to Scott, who is the only person I’d want to go through something like this with.

XO Jess