When the doctor told me at Leo’s prenatal anatomy ultrasound that it looked like he had a Congenital Heart Defect (CHD), I honestly wasn’t even phased at that particular moment. This doesn’t mean I was embracing his additional diagnosis -- we already had found out a few weeks before he would be born with Down Syndrome. It means I was still in a state of shock from his Trisomy 21 diagnosis. Hearing about a Congenital Heart Defect was like thinking, “Ok, and what else do we want to add on to this massive pile on our plate?” A trip to the Cardiologist’s office confirmed that Leo has Tetralogy of Fallot, a CHD that usually need to be corrected with surgery as an infant in order to live. At that point I was still numb.
Fast forward a few weeks before Leo was born. We were given a tour of the hospital he would be having open heart surgery in. The reality of everything came flooding in and my hormonal pregnant-self had a good cry - fortunately in the parking lot where no one else had to witness. We didn’t know whether or not he would need open heart surgery immediately after he was born or whether we would be able to wait a few months to get him to a bigger size -- like a Thanksgiving turkey was my analogy because my mind shifts to jokes when I find myself nervous or in an uncomfortable position…unfortunately they are considered mom jokes.
Fast forward some more to when Leo was a few days shy of turning 4 months old. He had his surgery, an entirely different story on its own. Fortunately, everything turned out well in the end, all things considered. They were able to fix two of the four things permanently, the third issue should resolve on its own, and the last issue they were able to fix temporarily. This means that in the future he will need surgery to permanently fix his heart. This has always been on the back of my mind, but before every Cardiology appointment, it comes rushing forward. I find myself wondering if, at the end of the appointment, the doctor will say that she wants to see us in 1 or 2 months instead of 6 to 8 months. Honestly, even after going to all these appointments over the last 4 years, I still don’t understand much of what his doctor tells me after his echo. She is the sweetest lady in the world and a wonderful Cardiologist, so I smile, nod, and pretend like I’ve always loved biology and aced each class in high school (although that was definitely never the case). I listen and wait nervously until I hear the number of months before we need to come back for the next check-up.
Up to now I usually found myself breathing a sigh of relief. Thankfully our last appointment was even better than most! I was also given a small dose of hope. We always prayed that Leo would be able to wait a few years so that his surgery would be a procedure with a catheter instead of open heart. It was always our wish, but I never let my guard down. I always prepared my mind for the harder alternative. Well, after Leo’s last appointment, my hope grew like the Grinch’s heart (pun intended) - about 3 sizes bigger. Leo’s heart is looking good! A surgery in the near future doesn’t seem as likely as before. Thankfully, doctors are starting to do procedures with catheters to fix what Leo would need, which means there’s a more tangible chance that he might not require a second open heart surgery. This is the kind of hope that any heart warrior parent holds on to for dear life. I still realize that it might not be possible for him and we’ll take it one appointment at a time, but for now, I can rest easy for the next 6 months when it comes to Leo’s heart - although any actual physical rest is not in my cards thanks to having three kids.