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Determined to overcome HLHS

  • Tripp Undewrwood
  • 6/30/2014 12:00:00 AM
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Kerri Dunn can always tell when her son Peter is determined to do something because when he gets deeply focused his face scrunches up and he squints one eye tightly shut, which his mother says makes him look like a cute, 2-year-old version of Popeye.

It’s a face Kerri sees a lot, because Peter is a very determined little boy. The youngest of six children, Peter is always trying to keep up with his older brothers and sisters—or “my kids” as he calls them. And, despite his smaller size, he still manages to do so—whether they’re walking, running or even climbing trees.

While his determination to keep pace with his older siblings may seem cute on the surface, it’s actually an incredible testament to Peter’s strong will. Not only is he managing to follow in their much larger footsteps, he’s doing so with only fifty percent of a working heart beating inside his chest.

Troubling images

Before Peter was born, Kerri and her husband Mark received frightening news during Kerri’s 18-week check-up: the ultrasound technician didn’t see any sign of blood flow in the left chambers of the baby’s heart. The discovery meant Peter most likely would be born with Hypoplastic Left Heart Syndrome HLHS, a condition where the left side of the heart is too small and underdeveloped to provide proper blood flow to the rest of the body. It’s a serious condition that often requires multiple, complex surgeries to repair.

A second ultrasound taken a few days later confirmed the HLHS diagnosis. Based on the advice they received from their local care team in Rhode Island, the Dunns called Boston Children’s Hospital’s Advance Fetal Care Center (AFCC) for help.

“I remember feeling completely overwhelmed at the time,” Kerri says. “When you get a diagnosis like this you just feel so helpless, and we knew that the only thing we could do for the baby was get him the best care available. Our doctors told us to go to Boston Children’s—so that’s exactly what we did.”

A calming effect

After going over the Dunn’s case it was decided by everyone that Peter would be born at the adjoining Brigham and Women’s Hospital, then transferred to Boston Children’s Heart Center where, at just a few days old, he would undergo the first of the three surgeries needed to correct his HLHS.

When the time for surgery came the Dunns were understandably nervous. But there was something about the way pediatric cardiac anesthesiologist Alfonso Casta MD, interacted with Peter—and Kerri and Mark—that reassured them. In fact, that early morning visit not only set the tone for Peter’s first surgery, but the Dunn’s entire Boston Children’s experience.

“From the moment Dr. Casta introduced himself and started speaking softly to Peter I knew we had done the right thing in coming to Boston,” Kerri remembers. “He probably cares for dozens of families a day, but that morning we felt like we were the only people in his world. It was comforting in a way that’s difficult to put into words, but it meant everything to us.”

Nestled in Casta’s arms, Peter was taken to the surgical suite to be prepped for surgery while the Dunns were introduced to Peter’s surgeon, Christopher Baird, MD, director of the Congenital Heart Valve Program. Like with Casta, Kerri and Mark felt an immediate connection with Baird and marveled at how his calm demeanor managed to settle their own frazzled nerves.

“Dr. Baird has such a caring and steady nature. Even though we only spoke for a few minutes we were able to establish a real connection and sense of trust with him,” Kerri says. “As we headed to the waiting room we actually breathed easier than we had in weeks. Knowing that people like Drs. Baird and Casta were taking care of Peter, it was as if a huge weight had been lifted off our shoulders.”

A place of hope

Peter’s surgery was a success and his recovery went better than anticipated. He was discharged from the Intensive Care Unit early and was breast-fed without issue. (Many young heart surgery patients have trouble feeding for days or weeks after their operation, sometimes requiring feeding tubes. Peter, however, had a healthy appetite from day one.)

Over the next two years Baird and the team at the Heart Center checked in with Peter often, eventually performing his second and third surgeries. He was discharged for the final time just a few weeks ago and is already laughing, playing and working hard to keep up with his five older siblings.

And when Peter slows down enough for Kerri to bring him to Boston Children’s for his follow-up visits she’s amazed at how differently she views the hospital’s lobby compared to the first time she came through its doors.

“When we first came to Boston Children’s, my heart broke for every family I saw because I knew they were most likely going through a difficult time,” she says. “But when Peter and I go there now I recognize it as a place of hope. Everyone, from the doctors to the families, is there because they want the best care for children. That kind of determination is inspiring to be around and I can’t help but feel like it left an impression on Peter.”

For more information visit the website for Boston Children’s, Heart Center

For additional more information visit the website for  Boston Children’s Advanced Fetal Care Center.

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