Stories about: Our Patients’ Stories

Parent Q&A: Tips for feeding tube management

2015-11-18_14.13.20Meet 13-month-old Evie and her parents, Amy and Erick Moy. Evie was diagnosed prenatally with Down Syndrome and spent the first six weeks of her young life in the neonatal intensive care unit. During that time, doctors identified a second condition: she was born with three holes in her heart.

In order to undergo the open-heart surgery required to correct the heart defect, Evie needed nutritional assistance — extra fluids and calories delivered via a feeding tube to build up the strength prior to surgery.

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Vinny “The Conqueror” battles HLHS

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My husband Mike and I will never forget the feeling of excitement we had the morning we were finding out if we were having a boy or a girl. It seemed like we had to wait an eternity, wondering whether we’d hear the words “it’s a boy” or “it’s a girl.”

Finally, the time came — and our nurse let us know we were expecting a BOY! After screeching from excitement and smiling from ear to ear, we quickly realized something was wrong.

Our doctor had noticed the left side of our son’s heart was noticeably smaller than the right, a sign that he had a condition called hypoplastic left heart syndrome, or HLHS. With HLHS, the left side of the heart is underdeveloped and unable to properly pump blood.

That day, our world immediately changed. Our minds were racing in every direction, and it seemed like we were literally living in a nightmare. We had plans of shopping for baby clothes and celebrating over a nice lunch, and instead we were meeting with doctors all afternoon and uncontrollably crying. It was this night we named our son “Vincent” (Vinny for short), which means “to conquer.”  We needed a strong name for a boy who needed to overcome so much.

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Catching up with Poppy: Life after an eye tumor

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Poppy with her little sister Hazel (Courtesy of Dana Biagini)

When Poppy Biagini was just four months old, her family got news no parent wants to hear — that she had a rare, rapidly growing tumor in her right eye called a retinoblastoma.

That was almost three years ago. But if you looked at Poppy today, you’d be hard pressed to tell that she’s anything other than your average 3-year-old who loves Curious George, swim class and playing dress-up.

“She knows that there’s something a little different with her eye than everyone else’s,” her father Dana says. “But she’s handling it well.”

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3-D printed heart makes a rare keepsake for this Alabama family

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Dr. Jason Ayres with his son Patrick, Dr. Sitaram Emani, and Patrick’s 3-D printed heart

A clinical trial to outline the benefits of using 3-D printed hearts for surgery was recently funded by the nonprofit organization Matthew’s Hearts of Hope. Read more about this on our sister blog, Vector.

Jason Ayres, a family doctor in Alabama, was speechless as he held his adopted son’s heart in his hands — well, a replica of his son’s heart, an exact replica, 3-D printed before the three-year-old boy had lifesaving open-heart surgery.

Patrick Ayres was one of the Boston Children’s Hospital’s first beneficiaries of 3-D printing, which in 2015 helped open a new frontier in pediatric cardiac surgery.

Patrick was born with numerous cardiac problems; in addition to double outlet right ventricle (DORV) and a complete atrioventricular canal defect, his heart lay backwards in his chest. DORV is a complex congenital defect in which the blood pumped from the heart to the body lacks adequate oxygen. Complete atrioventricular canal defect is a combination of issues related to holes in the heart and/or ineffective heart valves.

“There were a lot of things wrong with his heart,” says Jason. “We knew early on that he’d need complex surgery to survive.”

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