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Do you know a kid with a broken heart? I’m not talking about puppy love. Or a teenager devastated after a break-up. I’m talking about kids whose hearts are truly physically broken. Kids whose hearts have to be repaired or else a normal life just ain’t happening.

Kids like my son.

Every February, we celebrate American Heart Month. It’s when we raise awareness about heart disease. The usual focus is on the type of heart disease that’s usually preventable. The kind you can get as you get a little older if you don’t care of yourself.

But, many times, the forgotten heart diseases are in the smallest of people. The little ones who did nothing to cause their broken heart. Who had no choice in the matter. Congenital Heart Disease (or the heart disease/defects that babies are born with) is actually the most common birth defect of them all. They come in a wide range. Many are so mild that they never need surgery and never cause any problems. Others, like my son’s defect, require surgery almost immediately. And a few require multiple surgeries or even a heart transplant.

I’ve seen quite a few cases of congenital heart disease, but none of them could prepare me for what I’d face with my own son and his broken heart.

His story

When I was in my 3rd year of medical school, I found out I was pregnant with my 2nd child. I was excited, but also a little nervous and overwhelmed. Mainly because I knew I needed to make it through my clinical rotations over the next year-and-a-half in order to graduate. Not to mention the Board exams I’d also have to face. Life was definitely busy and my pregnancy actually seemed to fly by. I was excited when my 20-week mark came around. It was time for my regularly-scheduled ultrasound. Of course, my OBGYN ordered the ultrasound to make sure my baby was developing and growing normally. But, I was just excited to see the outline of this little bundle that had been cooking inside of me. And – most importantly – to find out if I was having another girl, or my 1st boy!

I sat through the ultrasound, and was pretty relaxed. Just waiting for the news on boy vs girl. But, then it felt like the ultrasound was taking longer than it did when I was pregnant with my daughter. The tech didn’t seem worried at all, but she told me she had to go grab the doctor to take a look. After a few minutes, I was finally given the news. Yes, I was having a baby boy (hooray!). BUT….he had something called Transposition of the Great Arteries (TGA). When his heart formed, his major vessels were switched, and it would cause a major problem with blood flow after he was born. He’d require surgery pretty soon after birth.

His heart was broken.

And at that moment, so was mine.

I couldn’t help but to cry and to worry. This was so not what I was expecting. I went home and did as much research as I could. Even though I’d already learned so much about TGA in school, I dove even deeper when I realized this was really happening to my own kid!

We were “lucky” in a sense, because he had a defect that usually required just one surgery. The outcomes were mostly good, and he had the potential to live a pretty normal life.

But I was still scared.

I ended up with at least a dozen more ultrasounds, a ton of extra doctor’s visits and tests to make sure my baby boy was still growing and developing the way he should. The perinatologist. Pediatric cardiologist. Stress tests. Blood tests.

It was a lot.

Plus I was still in med school.

Looking at the bright side, I got a ton of ultrasound pictures and got to see my baby boy and hear his heart beating way more than any regular pregnancy. But, I was worried. Man, was I worried.

Delivery day

I ended up being induced at 39 weeks. It needed to be a controlled delivery, to make sure all the right people were there. The induction happened through the night (and it was the worst thing ever). But, the delivery went as planned. I got to hold him for a little while before they whisked him away to the NICU for monitoring. I visited him as much as I could. And tried to take my mind off of everything by studying for an upcoming exam in the midst of all of it.

The worst part was being discharged from the hospital without him. Watching them load him up into the special NICU ambulance to take him to the local Children’s Hospital. Of course my post-partum hormones kicked in, and I couldn’t help but to cry from the overwhelm of it all. All the doctors had prepared me for this day. They told me what the plan would be. I had awesome nurses taking care of me. And I knew he was in good hands. But, I don’t think anything could’ve ever prepared me for the feelings that came with leaving the hospital without my baby in my arms.

Reunited, and it feels so good

We were eventually reunited in the Cardiac ICU at Children’s Healthcare of Atlanta, Egleston. Thankfully, he was comfortable and able to breath on his own before the surgery. Even though he couldn’t survive for too long with the 70-75% oxygen saturation in his blood.

Surgery day

The day of the surgery came, and again the emotions were overwhelming. Again, they prepared me. I knew what was going to happen. But, watching the team roll him off to surgery made it all come pouring out again. The surgery day was a long one. I’m talking like 12 hours long. I got regular updates from the operating room, and things went well. But never did I think I’d have to consent to blood transfusions for my baby, or have him hooked up to a heart bypass machine while they worked on his little heart for hours.

I tried to keep myself occupied by pumping and storing breast milk for him. Preparing for the time when his team would tell me he was ready to eat. Everything that was happening was out of my control. So pumping was the one thing that I COULD control. It was the one thing that only I could give to him. Plus, I knew about all the benefits.

When he finally came back out to me after the surgery, he didn’t look like himself. I’d already memorized just about every piece of his body in only a few days of his life. But, this baby that they returned to me had tubes coming out of just about everywhere. His chest was still wide open (but covered with protective material, of course). They couldn’t close it because there was still too much swelling from the surgery.

I could literally SEE HIS HEART.

I couldn’t move him or hold him. His fingers and toes were the only things I could touch. I snuck a little rub on his head every now and then.

It was so hard.

The next day, they stitched his chest back up. Amazingly, it was done right at the bedside. Without spectators, of course. I was just thankful they didn’t have to wheel him away to the operating room again, without me.

After that, his hospital course was pretty smooth. He had a few episodes of super-fast heart beats that required changes in his medications. But he recovered well and started feeding on the breast milk I’d saved just for him. And he was home by the time he was 2 weeks old.

Bringing him home

I have to admit, I was so nervous bringing him home. I felt like he was so fragile. Even though I sat through a discharge class and got a ton of instructions on his care, it was all so new to me. I didn’t want to break him. I didn’t want to do anything wrong. Sure, I was going to be a doctor soon, and I had little problem with taking care of other people’s kids. But, there’s a certain level of anxiety when it’s your own.

Luckily, I had a little time off of school to spend with him. And I tried my best to enjoy every single one of those moments (in the midst of my fear!). No complaints when I had to wake every 2 hours to feed him. No complaints when I had to walk up and down the hall to soothe him. I was just thankful to have him home and whole.

Recovery

He had A LOT of doctor’s visits in the first few months. We had to make sure that his repaired heart was working well, and that he was growing and developing normally. The visits eventually spaced out, and he’s now 11 years-old, seeing the cardiologist just once a year to make sure his heart continues to grow well right along with him. No medications. He’s had an amazingly smooth course since his repair, and is an active, normal pre-teen. He’s been able to play soccer, flag football, basketball – all without any restrictions. I’ve never isolated him or made him feel any different than his siblings or friends.

His heart is special, but his defect doesn’t dictate his life.

His pregnancy, delivery, and surgery rank pretty high up there when I think about the most stressful times in my life. But, I count my blessings everyday that things worked out so well. I had a ton of support from family, friends, and the awesome medical team that took care of both of us.

He’s been through a lot. And luckily he doesn’t remember most of it. He didn’t ask for his defect. None of these kids do. Yet so many are struggling the very minute they arrive on this earth. Many of them have a much more difficult course than my son did. With multiple surgeries, multiple hospital stays, multiple medications.

So, remember these little ones when you think of American Heart Month. If you’re lucky enough to have been born with a normal, healthy, functioning heart – count your blessings. And do what you can to take care of it every single day. There are babies out there who aren’t so fortunate, but fight the good fight every single day!

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