From frustration to confidence: Training helps parents replace their baby’s NG tube
When the parents of 10-month-old Miles Couture were first told he would need a nasogastric (NG) tube to receive his nutrition, “it was heartbreaking,” says his mom, Catherine. Miles, who was born at just 26 weeks, had struggled with being able to feed on his own. But he seemed to be taking more by mouth. ... Read More
A legend for Zora: How genomic testing provides answers in the face of grief
So often after a perinatal loss, parents are left with uncertainty about what caused their baby’s death and the haunting question, “what if.” To help grieving families find answers to these questions, Dr. Monica Wojcik and her colleagues in the Division of Newborn Medicine are conducting genomic autopsies to learn if and what genetic factors ... Read More
Jada’s story: After cloacal exstrophy repair, an unexpected gift
Koda Wilder Ladchuk was born slightly premature, healthy, and happy. But this isn’t just a story about 4-month-old Koda. It’s also a story about his mother, Jada, and an incredible outcome no one could have predicted — not even Jada herself. Jada, now 25, was born with cloacal exstrophy (also known as OEIS syndrome), a ... Read More
Surgery for Chiari malformation: “I was just happy to have an answer”
Abby Buckley loves being active, whether that means hiking, cycling, or playing sports like javelin, shotput, and discus. But in eighth grade, a bad concussion sidelined her — and led to an unexpected diagnosis. A magnetic resonance imaging (MRI) scan showed that she didn’t just have a concussion. She also had a Chiari malformation, a ... Read More
I tried the keto diet to help my epilepsy and it changed my life
My name is Dennis. I’m 15 years old and live in East Greenwich, Rhode Island. Two years ago, I started the keto diet to help my epilepsy and it changed my life. Here’s my story… I was 7 when I was diagnosed with epilepsy. I was too young to know what that really meant or ... Read More
A taste of childhood: One family’s journey to an IV-free diet
Children with short bowel syndrome often miss out on childhood’s simple and delicious pleasures, like birthday cake, pizza, and ice cream. But Dr. Lissette Jimenez and the team at the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital are working to change that. Short bowel syndrome is caused by the loss or lack of function of the small intestine, ... Read More