Living with half a heart: Aiden’s update

You can find Jenny's first two blog posts on Aiden below:

Our Son's Story: Born With Hypoplastic Left Heart Syndrome, Half a heart: Aiden's story

About four years ago, our son Aiden was prenatally diagnosed with hypoplastic left heart syndrome (HLHS). We were told he would be born with half of a functioning heart. I was 20 weeks pregnant, very scared for the future of our baby boy and had 19 weeks until I got to meet him. I feared what his quality of life would be, if he would be able to do things that little kids do, and to be honest, what my family’s life would be like. What I did know was Aiden would have to follow a three-stage palliative surgical path in order to have a shot at life. The first surgery takes place days after birth, the Norwood. The second surgery takes place around 4 months of age, the Glenn. The third surgery, the Fontan, takes place at 4 years of age. Here we are, coming up on Aiden’s fourth birthday with a looming surgery date hanging over our heads. I feel like that same pregnant lady from 2014 – scared and anxious. But I’m also a mom to an almost 4-year-old (alongside his older, 5-year-old brother, Noah) who feels immense amounts of joy, hope, happiness and love throughout the adventure of raising them.

Aiden has exceeded nearly every expectation I had for him back in those dark, scary post-diagnosis days. He is witty and mischievous, incredibly loving, strong-willed and a ball of energy. Superhero costumes are everyday-wear at our house, and you will always find a dart from a Nerf gun that Aiden shot. Aiden is in preschool four days out of the week. He has friends, he’s learning so much and he even plays soccer at school. He would love to play team sports, but he just doesn’t have the endurance right now. And there’s a kick in the gut. Aiden has outgrown his “Glenn circulation,” and it’s time for the Fontan. Sometime in the next six months, I will hand my baby boy over for a third open-heart surgery. How? How am I supposed to do this? When he was 4 days old, I knew I loved him, but I didn’t know him.  At 4 months old, I knew everything about that child as we spent every day together. He didn’t talk non-stop at 4 months old. He didn’t tell me he loved me or that I’m lovely and beautiful (he really says that - it’s precious) like he does now. He didn’t have awesome dance moves that keep us laughing in stitches. But he has all of that now and then some. 

Welcome to my brain. I don’t know how to explain this to him. We’ve had outpatient day surgeries for minor procedures, but this is something entirely different. Aiden will be poked and prodded for likely two weeks while recovering from this surgery. I’m sure he will be anxious. Or will it just be me? I ask myself: will he leave the hospital the same sweet little boy? Thankfully, the Fontan will allow Aiden’s heart to do less work. His lips won’t be purple after playing on the playground for 10 minutes. He won’t run out of breath from running across the room. His nails will be pink, and his energy levels will improve – although I’m not sure how I’m going to keep up with him when that happens!

I’ve known about this surgery for over four years now. It haunts me. But I’m ready to rip the bandage off and really just get on with life. Not to say that the Fontan is a cure. There is no cure for HLHS. He will always have half of a functioning heart. But right now, this is our best option. My hope is that medical science will catch up with us and that complications from HLHS will be a thing of the past. But for now, we’re getting the best we can get. I’m so thankful we have Texas Children’s Hospital, the best pediatric cardiology hospital in the United States, within four hours from our home.  Before Aiden was even born, we had the best of care from Texas Children’s Hospital, and I know that level of care will be provided with the Fontan and well into Aiden’s life.  

The boys and I read nearly every night, and a book that’s always on rotation is Michael Rosen’s “We’re Going on a Bear Hunt.” When we reach an obstacle in the book, it reads: “We can’t go over it. We can’t go under it. Uh oh, we’ve got to go through it.” And there’s that kick in the gut in again. My boys are laughing at the fun story, but inside I’m thinking about the Fontan. We have to go through with it. We don’t have a choice. But you know what? We’re going to get through it, together.

February is American Heart Month. Join the CDC Division of Heart Disease and Stroke Prevention and Million Hearts® in letting younger adults know they are not immune to heart disease, but that they can reduce their risk—at any age—through lifestyle changes and by managing medical conditions. For messages and resources, click here.