Beyond Cardiac Critical Care: Joseph’s Story

The PCVICU is staffed by a medical team that excels both in cardiology and critical care medicine, trained to care for patients with multiple life-threatening conditions. They know that, for these patients and their families, trust is everything. And they’re constantly thinking of ways to surround them with support — an approach they refer to as “360-degree care.”

That’s crucial for babies like Joseph, who was born with a group of heart conditions: transposition of the great arteries (TGA), a large ventricular septal defect (VSD), and pulmonary stenosis. Hours after birth, he was set up with Dr. Gupta and the PCVICU team with intensive, around-the-clock care to keep him stable. Six days later, he had his first open heart surgery with the cardiac surgery team, led by division head Dennis Mello, MD. Dr. Mello placed a shunt into Joseph’s tiny heart — a temporary measure to help it work better until he was ready for a full corrective surgery.

During that surgery, Katie and Dan followed along on the EASE app, receiving regular updates from the team inside the operating room. Despite their best efforts, though, they also felt overwhelmed at the thought of their newborn baby having such a major procedure. Katie, at six days postpartum, broke down in tears.

“I was a mess during the surgery. Everything felt really scary,” says Katie. “The cardiac ICU nurses were right there with us, rubbing my back, bringing me tissues. They are wonderful. I can’t say enough good things about them.”

Joseph sailed through the procedure. But during his recovery, a separate health crisis came on: necrotizing enterocolitis (NEC), which occurs when the intestinal wall of a newborn dies — in Joseph’s case, due to a lack of blood brought on by his heart condition. In those vulnerable weeks after heart surgery, he was facing a second life-threatening condition.
 

Nothing could make this kind of experience easy for parents like Katie and Dan. But a few things can, at the very least, make it a little less hard — like having a say in their child’s care. Connecticut Children's pediatric cardiovascular ICU team invited Katie and Dan into every conversation.

“We encourage our families to be at the bedside and participate in hands-on care of patients as much as possible to allow for parent-child bonding, while ensuring patient safety,” says Dr. Gupta.

“They were so good about including us, and valuing our input,” says Katie. “If I was pumping or holding Joseph, they would wait for me to do the medical rounds. As a mom, I couldn’t take care of him like a regular newborn, but I still felt like I had ownership over his care.”

After seven weeks in the cardiac ICU, Joseph was healthy enough to go home and focus on just growing bigger, doted on by his siblings and family. A few months later, he returned to Connecticut Children’s so Dr. Mello and team could perform the second and final heart surgery he needed, known as the Rastelli procedure.

When it was time to start the procedure, Joseph was sound asleep in Katie’s arms. Joseph’s anesthesiologist invited Katie to carry him into the operating room for sedation.

“They were able to put the mask over his face while he was in my arms, and then put him on the table. He didn’t know anything happened,” says Katie. “For all the other emotions of that moment, that felt really good. They were always doing things like that – things to make the hard a little bit easier.”
 

Joseph is now 20 months old, and thriving.

“He’s amazing — completely on track, walking and babbling,” says Katie. “It was a long year, but he’s just living a normal life now. The things that Connecticut Children’s can do for babies like Joseph, it’s beyond imagination.”

At a recent follow-up appointment, Katie and Joseph ran into a familiar face in the waiting room: Dr. Gupta.

“I saw Joseph running back and forth like a normal toddler and smiling. Katie was smiling ear to ear,” remembers Dr. Gupta.

To anyone else, it would look like a normal run-in between a healthy child and their former doctor. To Dr. Gupta, it was momentous. It was exactly what her team had worked so hard to achieve.

When she returned to the cardiac ICU, she shared the news with everyone — from the nurses and advanced practice practitioners to the respiratory therapists, nutritionists and more.

“The joy and pride I saw on the faces of my team was priceless,” Dr. Gupta recalls. “Knowing that Joseph is doing well gives us a lot of comfort. It’s the reason we spend so many sleepless nights by our patients’ bedside. It’s the reason we work so hard.”