Like father, like daughter: Finding care for cavernous malformations
After Charlotte Miller underwent neurosurgery, her parents, Daniel and Eliza were a little nervous to tell her that part of her head had been shaved. But the spunky 5-year-old wasn’t fazed. Instead, she pointed to her father’s head and laughed, “Now I’m going bald like you, Daddy!” A sense of humor isn’t all Charlotte and ... Read More about Like father, like daughter: Finding care for cavernous malformations
After two ACL tears, a skier reconnects with her body and her sport
The memory remains vivid in Sophia’s mind. Racing down a slalom course at top speed, she hit a patch of bad snow. “The next thing I knew, I was launched up in the air. My legs were above me and I lost sight of my right leg. I felt my right knee twist and I ... Read More about After two ACL tears, a skier reconnects with her body and her sport
After a marathon year, let’s make organ donation part of our new normal
Six years ago, an organ donor saved my daughter’s life. Cora was born with a congenital heart defect called hypoplastic left heart syndrome (HLHS), which was fatal if not treated. After more than four years living with HLHS — and six open-heart surgeries — Cora’s only chance of survival was a heart transplant. On the ... Read More about After a marathon year, let’s make organ donation part of our new normal
How growing up with sickle cell disease is shaping Nancy’s future
Imagine appearing completely healthy while managing a life-threatening condition. Most people who meet Nancy Blankson would never know she has sickle cell disease (SCD). Her symptoms are not easily visible. It’s a challenge she lives with every day along with periodic pain crises, which at times, she says, can be virtually unbearable. Nevertheless, the 20-year-old ... Read More about How growing up with sickle cell disease is shaping Nancy’s future
Pleuropulmonary blastoma: Caring for Cal
Each time the UPS truck makes its way up Becky Baker’s driveway in Lyons, New York, her 3-year-old grandson, Cal, is certain there’s a package for him. Today, the delivery is in fact for Cal — but not exactly the drivable mini Jeep he was hoping for. “Those are your diapers, buddy,” his grandmother says, ... Read More about Pleuropulmonary blastoma: Caring for Cal
A malunion fracture, baseball, and M&M cookies: Tyler’s story
Tyler Weygand loves baseball, and he’s good at it. Good enough that few balls ever get past him in the infield. So good that for nearly ten years, his parents and coaches in Saratoga, NY didn’t realize he could not rotate his left arm due to a malunion fracture. A fracture that healed out of ... Read More about A malunion fracture, baseball, and M&M cookies: Tyler’s story
Sending kids to school with celiac disease: One mom shares her story
As a neonatologist, it’s my job to understand and treat babies who need critical care. But as a mom whose two children live with celiac disease, it’s my job to find people who understand their specific medical needs and will advocate for them as much as possible. That’s why I’m so grateful for the Celiac ... Read More about Sending kids to school with celiac disease: One mom shares her story
Back to school in 2021: Three families share their stories
It’s been a long year-and-a-half for students since schools first shut down due to COVID-19. Thrust into a situation none were prepared for, students, parents, and teachers have struggled emotionally and academically. After a long period of untraditional schooling, what can parents and students expect, and how can they gear up for the coming school ... Read More about Back to school in 2021: Three families share their stories
A kiss from their sister: A family’s journey with cleft lip care
Kelly and Ben’s experience with cleft lip care at Boston Children’s Hospital spans multiple years and multiple children. Two of their daughters, Molly and Annie — five years apart in age — were born with an incomplete unilateral cleft lip. The couple won’t shy from admitting that receiving the diagnosis doesn’t get easier. “It’s a ... Read More about A kiss from their sister: A family’s journey with cleft lip care
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 about From frustration to confidence: Training helps parents replace their baby’s NG tube