Blog

Helping your child understand puberty

We all remember the changes — and awkwardness — of puberty. But helping your child navigate puberty is a whole different matter. For answers, we turned to Boston Children’s Primary Care Alliance physician Caitlyn Hark, MD, at Framingham Pediatrics, and Frances Grimstad, MD, a pediatric and adolescent gynecologist in the Division of Gynecology at Boston ... Read More

Thriving — not just surviving — as an adult with esophageal atresia

Willa Barnett has a story to tell — and it’s a big one. At 26, she’s experienced a slew of serious health challenges since she was born with VACTERL association. In this group of growth anomalies, certain parts of the body don’t form properly during fetal development. This can lead to problems with the vertebrae, ... Read More

Hope in a new home: A family’s journey with HHT

When Yeiden Pérez Camacho imagines the future, he sees himself on a basketball court. At 13, he’s already an award-winning athlete in several sports, including basketball, volleyball, tennis, and table tennis. His 8-year-old sister, Adienee “Adi” Pérez Camacho, is a budding gymnast who loves cooking and crafting with her family. Yeiden and Adi grew up ... Read More

Rh alloimmunization: A family’s experience across two pregnancies

After her second child was born 14 years ago, Erin was convinced she’d never have another baby. Not because of her age or because she didn’t want to grow her family, but because of the painful prenatal experience that had stayed with her for years. Erin had developed alloimmunization, a condition in which the immune ... Read More

The only way through it: How Sebastian learned to manage chronic pain

Sebastian Sachs is passionate about theater production and team sports, two unrelated activities that have a lot in common. Both require a dedicated group of people working toward one common goal — something that could also be said about Sebastian’s experience learning how to manage chronic pain. “It felt like I was on a medical ... Read More

Beyond average-based medicine: HIE as a blueprint for data-informed care

Historically, outcome prediction in medicine has followed a familiar formula: run a clinical trial, publish the results, guide care based on averages. The model has served for decades, despite its limits. In neonatal care, where decisions can carry lifelong consequences, averages are often insufficient. That’s why Ellen Grant, MD, MSc, director of the Fetal Neonatal ... Read More

Stay chill, show up, move forward: Nolan’s journey with ITP

At 18 years old, Nolan Ryan is an all-around athlete. Between basketball, football, and lacrosse, sports have shaped his daily life for years. He’s a true team player who shows up to every game with humility and dedication, whether he’s on the field or sitting on the sidelines. Like most student-athletes, Nolan had to balance ... Read More

Nanoparticle drug combo treats venous malformations

Venous malformations are abnormally shaped veins that develop when the cells lining the blood vessels grow too fast when they aren’t supposed to. Children can be born with them, and as the child grows, the venous malformations can get bigger. Venous malformations are a type of vascular malformation that can range from small and superficial ... Read More

Biventricular repair linked to better outcomes in superior-inferior ventricles treatment

The complexity of superior-inferior ventricles — a condition in which one ventricle is positioned on top of the other — has often limited surgical treatment. But Boston Children’s heart specialists recognized an opportunity to make treatment for the rare condition more accessible to children. Their solution has been a procedure the hospital is at the ... Read More

Small gains with big meaning: Loic’s story of deep brain stimulation for PKAN care

Loic, 5, lives in Montana with his parents, Sherine and Mark, and his sister, Selah. He loves Spider-Man, sushi, and the Fourth of July. He laughs easily, sings along to his favorite shows, and is a big flirt. These are the little things that Sherine says make Loic, Loic, and which, until earlier this year, ... Read More

‘So much has changed’: Advances in XLH care help siblings thrive

Learn more about our Skeletal Health Center.    When Stephanie Capone was a child, she was diagnosed with X-linked hypophosphatemia (XLH), a rare genetic condition that makes bones weak, soft, and easy to fracture. XLH, which can be passed down through families, can lead to difficulty walking, bowlegs, short stature, and other challenges. “I underwent ... Read More