Grow Hopeful: Joseph’s Story

“The second my doctor told me, my heart dropped. I could feel it in the pit of my stomach. This was serious,” she says. Instead of baby Joseph being placed in her arms after delivery, he would need to be rushed into a neonatal intensive care unit (NICU), and then heart surgery.

As Marisol adjusted to the news, she also faced a big decision. Who would provide Joseph’s care?

She and her family live in Danbury, which meant she had her pick of health systems throughout Connecticut and New York City. She chose Connecticut Children’s – for its nationally-ranked Division of Neonatology, its Heart Center’s exceptional surgical outcomes, and its legacy of partnering with adult health systems, including her own labor and delivery team. It all added up to the experience she wanted for her baby.

And with family-centered care, like overnight rooms for families in the NICU and pediatric intensive care unit (PICU), it was also the right place for her.

“I knew Connecticut Children’s would enable me to get the self-care I needed to stay healthy and strong for my baby,” says Marisol, “and be at his side whenever and for however long I wanted.”

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“Everyone was prepared and on the same page”

So, as is the case for many families, Connecticut Children’s began caring for Joseph before he was even born.

Alicia Wang, MD, director of Connecticut Children’s Fetal Cardiology program, followed Marisol prenatally for the remainder of her pregnancy. Using state-of-the-art fetal cardiac imaging, she diagnosed Joseph with Transposition of the Great Arteries, or TGA, a condition where the pulmonary artery and aorta are switched. To survive, he would need open heart surgery in the first few days of his life.

“By making a diagnosis before a baby is born,” says Dr. Wang, “we are able to anticipate the needs of a baby with congenital heart disease to ensure the best outcome possible.”

And as an integrated health system, Connecticut Children’s brings together all the specialists a family needs to prepare for what’s ahead. In the months leading up to her due date, Marisol talked at length with Dr. Wang to understand Joseph’s diagnosis. She met the team that would perform his heart surgery, and the neonatologists who would be with him from the moment of his birth.

Marisol was set to deliver at Hartford Hospital, with Connecticut Children’s neonatal experts standing by to make sure everything went smoothly. Just one floor down, Connecticut Children’s NICU at Hartford Hospital was ready to receive Joseph. This level of coordination is possible through Connecticut Children’s long-standing partnership with Hartford HealthCare, a shared commitment to patient care that’s since grown into a formal Care Alliance.

“Joseph was delivered in a place where immediate intervention was available to keep him safe,” says Dr. Wang. “With coordination between the obstetrician, labor and delivery team, and NICU, there was no delay in communication and treatment once he was born. Everyone was prepared and on the same page.”

“I will always be grateful to Connecticut Children’s”

Joseph was born on Sept. 26, 2016, five days before Marisol’s birthday. He was whisked into the NICU, and three days later, Connecticut Children’s pediatric cardiologist Frederic Bernstein, DO, performed an initial procedure on his heart – enlarging the hole between the heart’s two chambers – to prepare him for a more extensive surgery in the days to come.

“All you can think about and hope for is that he will survive,” Marisol says. Until then, because of Joseph’s fragile condition, she hadn’t been able to hold him – one of the “firsts” as a new mom that she was still longing to experience. Knowing that Marisol needed just as much care and healing as her baby, the cardiology and PICU teams approached her the day before Joseph’s second surgery.

“The nurses came up to me and said, ‘We want to give you your birthday gift now,’” Marisol remembers. “They then sat me down and handed me Joseph – he was connected to tubes and they positioned me so I could cradle him safely. I was able to hold my baby. I will always be grateful to Connecticut Children’s for that.”

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“I remember what holding onto hope can do”

When he was a year old, Joseph had one more surgery with Dr. Bernstein, a balloon angioplasty of his pulmonary artery. Now, at 4 years old, he will never need another heart surgery. But he continues to check in for regular follow-up care. Luckily, it’s available close to home at Connecticut Children’s Danbury location, where Joseph sees pediatric cardiologist Hank Leopold, MD.

“We love Dr. Leopold!” Marisol says. “He knows how to make Joseph feel comfortable and can always get him to smile. And as a mom of a child who will need regular follow-up appointments for the rest of his life, being able to see Dr. Leopold without a long commute makes visits that much easier.”

When Joseph is an adult, he will continue to receive care from Connecticut Children’s through our nationally-recognized Adult Congenital Heart Disease Services program.

But right now, he’s just a little boy – sturdy and active, with curly hair and bright eyes like his mother. If you didn’t know his story, you would never guess he has a congenital heart condition.

“To me, he is the embodiment of hope. He inspires me and everyone around us, every day,” Marisol says, wrapping her arms around Joseph in a soft hug. “Every time I look at him and remember what we went through, I also remember what holding onto hope can do.”

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