Beyond Congenital Heart Defects: Carter’s Story

Heart murmurs are so common in newborns they’re practically expected: About three out of four babies have one. They show up as an unusual noise between heartbeats, detected by a simple stethoscope.

There are two main categories:

• “Innocent” murmurs are caused by normal changes in a child’s body after birth. They don’t require any treatment. 
• Other murmurs are usually caused by structural issues in the heart, aka heart defects. Often, these aren’t a big deal either: Most repair themselves as a child grows, or remain minor enough that they never need treatment. Sometimes, though, a child needs medication or surgery.

Carter’s murmur fell into the second category. He was born with a hole between the lower chambers of his heart, known as a ventricular septal defect (VSD), and a smaller hole between the upper chambers, an atrial septal defect (ASD).

Which is why he needed Connecticut Children’s.
 

Soon after Carter’s birth, and then every few weeks after that, the family met with Connecticut Children’s cardiologist Olga Toro-Salazar, MD. Dr. Toro-Salazar directs non-invasive imaging for the Heart Center, specializing in technology like echocardiography and cardiac MRIs to create a detailed picture of a child’s heart.

That includes for tiny babies like Carter. Anneliz remembers being at once astonished and relieved to see the size of the tools that Carter’s care team used. His blood pressure cuff could fit on her pinky finger.

“It was strangely reassuring to see that they had such small equipment for all of these things, ready to go,” she says.

Besides checking on Carter’s heart, Dr. Toro-Salazar talked with Anneliz and Greg about keeping Carter healthy at home — the things he could do like normal (a family trip to Provincetown got the all-clear, to their surprise) and what to keep an eye on (disinterest in eating and weight loss, both red flags).

And eventually, when the VSD in Carter’s heart got bigger — instead of smaller, as they’d all hoped — they talked about surgery. 
 

The hole in Carter’s lower heart had grown to the size of a penny. Ultimately, the best plan was the one Anneliz and Greg dreaded most: open-heart surgery.

“It's kind of an earth-shattering thing. You're reeling,” says Anneliz.

Once again, they put their trust in Connecticut Children’s Heart Center — this time, the cardiac surgery team, led by division head Dennis Mello, MD.

“From the start, the team’s confidence in what they were going to do was very reassuring,” says Greg. “They average about one to two of these surgeries a week, so it wasn't a new case by any means.”

That said, every patient and family is unique — and Greg and Anneliz felt that too. As a studying Jehovah’s Witness, Greg was concerned about possible blood transfusions. He was touched by how Carter’s doctors responded.

“I was able to advocate for not wanting the use of blood, and they listened,” Greg says. “They’d had experience with other Jehovah’s Witness patients. They explained how they use a lot of techniques that involve no blood. They gave us options. It was a working conversation throughout — we were never dismissed. I'm really grateful for that.”

The day of surgery, Anneliz and Greg waited in a common area with Greg’s parents by their side, all four of them glued to the Ease app for updates. From the operating room, Carter’s team sent frequent messages: Carter was doing great. Dr. Mello and Dr. Stevens had secured a patch over the VSD. They’d sutured the ASD. Everything was closed and looked perfect.

Then it was done, and they were easing Carter out of sedation.
 

For the next few days, as Carter recovered in Connecticut Children’s pediatric cardiovascular intensive care unit (PCVICU), Anneliz and Greg shared the pullout couch in his room. Every morning, there would be a knock on the door: All of Carter’s specialists had gathered for medical rounds, their daily review of Carter’s progress. As always, the whole family was invited.

“They’d ask, ‘Do you want to come out into the hall, or do you want us to come into the room?’ We always had them come in, because we were always in pajamas,” says Anneliz. “Any question we had would be addressed right there. It never seemed like we were being talked around or talked over or even talked at. It was, ‘We’re all in this together to make sure Carter is going to be okay.’”

It wasn’t just the medical team checking on them, either.
    
“We rave about the entire hospital staff, from the top down. You consider the surgery, but then you have to consider the support that you're going to have behind it. That's such an important thing. We had a very, very good support system,” says Anneliz.

She felt a special connection with Miss Dee, a long-time member of the cleaning staff.

“I will never forget Miss Dee. She was so kind,” Anneliz says. “While she was running a broom around the room, she was telling us, ‘Your baby's gonna be just fine.’”

On their final day, headed to the elevator to bring Carter home, they even got to say goodbye.

See?” Miss Dee said, beaming. “I told you! You’re going home!”
 

Today at 6 months old, Carter is fully recovered. The holes in his heart are closed, and his heart is pumping normally. He can breathe easily, eat effortlessly, and thrive just like any other child his age. The only evidence of his health journey is a tiny scar from surgery.

“He’s in swimming lessons. He’s in daycare. He's rolling, he’s moving around, he's yelling up a storm with the other babies,” says Anneliz. “And he does a very good job of turning it on. He's a total ham.”

At his last appointment — sporting his signature look, a cozy bathrobe — Carter lit up when Dr. Toro-Salazar entered the room. When she reached for him, he jumped into her arms.

Anneliz and Greg felt a similar sense of joy. Ever since the birth, Carter’s heart defects had been weighing on all of them — physically for Carter, and emotionally for the two of them. Now, just like Carter’s heart murmur, that weight was gone. It was beyond imagination.

“We just really want to convey our thanks to everyone at Connecticut Children’s,” says Greg. “This is not an ideal situation for anyone. It can be very overwhelming and stressful. You have to trust your team. We had a great support system in our families, in each other — and in Connecticut Children’s.”