#vsd

When Fin was born, we had no clue about his health. As far as we were aware, he was a healthy typical baby.

Very shortly after birth, Fin was rushed to a local children’s hospital due to a suspicion of Down Syndrome. That itself wasn’t alarming, what was worrisome was that there are many very serious health conditions that are common in individuals with DS, and we har zero idea of his health status.

After a few days in the nicu, he was confirmed to have a medium large VSD (Ventricular Septal Defect) which is a hole in the lower area of his heart. This is a type of CHD, or Congenital Heart Defect. With its size, it would not be able to repair itself without surgery. We left with lots of information, many appointments with specialists, and the general knowledge that he would need open heart surgery around 6-9 months of age. I also had a list of heart failure signs that I had to carefully watch for.

Almost right away we all noticed he wasn’t gaining weight properly. He was extremely sleepy (a CHD sign), had a poor latch (due to DS), and his heart was just working so hard that he was burning more calories than he could take in. We tried so many things but not much truly helped. At one point, he even aspirated during a bottle feed and ended up with pneumonia, resulting in a scary week long Hospital stay.

By the time he was a month old, it was clear that surgery couldn’t wait. His body was working way too hard. So we had the goal to get him to 10lbs, then he’d undergo his repair.

By two months old, things were getting worse. He was struggling to gain weight still, and he was beginning to show signs of early stage heart failure. We knew he wouldn’t be able to reach his goal weight and that we’d have to go ahead with his surgery.

He had his surgery at three months old. It lasted around 9 hours in total. It was absolutely terrifying. Thankfully, his repair was a success and there weren’t any complications! Woo!! That first photo is when I was finally allowed to see him. I can’t even begin to count the amount of tubes and wires- it was daunting.

For reference, Fin was 7.11lbs at birth. On the day of surgery at 3 months, he was 8.6lbs. He was categorized as ‘severe failure to thrive’.

Recovery went fairly smoothly. I stayed with him all of the 12 days, and I honestly struggled to leave his side. I still struggle with it anytime he’s admitted. He won the hearts of the entire peds cardio floor (not shocking) and he slowly began to gain weight. He had follow up appointments with cardio extremely often for a few months, then just monthly, every 3 months, etc. He’s currently on just once a year!

His VSD repair and his heart have thankfully worked perfectly ever since. CHD isn’t something that can be cured, however. Anytime he’s sick, his heart will get checked. Any illness can cause issues with a person living with CHD. He’s had several hospital stays, minor surgeries and illnesses ever since but his heart has continued to hold strong.

That brings us to today! He’s a rambunctious 4yo who adores his brother, screams a lot, loves foxes and dinosaurs, and aims to destroy literally anything he possibly can. He is a charmer by nature and wins over the hearts of everyone he meets- even though he uses it as a trick a lot of the time, to get what he wants. He’s cute, he knows it, and he knows how to use it.