Jack had a first-of-its-kind surgery with the aim of making it his last
Jack Mangan loves fire trucks. He also loves monster trucks. So you can imagine his excitement about those two things being mashed up as a toy: a fire truck on top of a monster truck. The 4-year-old has an extensive collection of miniature hybrid monster trucks — one has a shark on top; another Scooby-Doo ... Read More about Jack had a first-of-its-kind surgery with the aim of making it his last
Beyond expectations: Treating Isaac’s teratoma through an EXIT procedure
Jennifer worked as a hairdresser until just days before delivering her son, Isaac, last December, even though she had planned to stop a week earlier. Beating expectations must run in the family because Isaac has been doing just that since before he was even born. He has amazed everyone around him with how well he ... Read More about Beyond expectations: Treating Isaac’s teratoma through an EXIT procedure
After surgery for a brain tumor, Jenny is moving ahead — and giving back
“It might sound weird,” says Jenny Eckert, “but I’m very grateful that I got hit in the face with a soccer ball.” A year and a half ago, Jenny, then 9, was playing soccer when she accidentally took a hit to the head — twice. Concerned about a possible concussion, her parents, Vanessa and Scott, brought ... Read More about After surgery for a brain tumor, Jenny is moving ahead — and giving back
No labels or limits with Apert syndrome: A letter to parents
Dear parents, If you’re reading this, your child might have been recently diagnosed with Apert syndrome and you don’t know what comes next with this rare genetic disorder that causes fusion of your child’s skull, hands, and foot bones. Or maybe you’ve been in the Apert world for a while and are looking for people ... Read More about No labels or limits with Apert syndrome: A letter to parents
The power of a second opinion for Merritt’s spina bifida care
In March 2020 — at the height of the COVID-19 lockdown — Jenna, Brian, and their 2-year-old daughter Merritt were practically the only passengers on their flight from Charlotte to Boston. Waiting for them in Massachusetts were Dr. Benjamin Warf, Dr. Carlos Estrada, and other experts from the Spina Bifida and Spinal Cord Conditions Center ... Read More about The power of a second opinion for Merritt’s spina bifida care
Ted Williams, chocolate milkshakes, and a pioneering heart team: What Bruce remembers about his heart surgery 65 years later
Bruce Chansky was the star of his neighborhood after he had heart surgery at Boston Children’s. It was 1959, a time when a child having heart surgery wasn’t common — it was newsworthy. Eleven-year-old Bruce was featured in his hometown newspaper, which only furthered his celebrity in Beverly, Massachusetts. Friends, neighbors, and strangers all wanted ... Read More about Ted Williams, chocolate milkshakes, and a pioneering heart team: What Bruce remembers about his heart surgery 65 years later
For Ana Sofia: How one mom found prenatal care for fetal pleural effusion
Alexandra is the first to admit she asks a lot of questions and needs to know details. “I’m curious about everything, and I want to know everything,” she says. “I do my research. I’m a pretty resourceful person.” It’s something she says can be off-putting to some people, but it’s also what saved her daughter’s ... Read More about For Ana Sofia: How one mom found prenatal care for fetal pleural effusion
A seat at the table: One family’s story of finding advanced care for hydrocephalus
To her parents, everything about 6-month-old Stella is a miracle. Rose and Vlad were ecstatic to learn they were expecting a baby after Rose was diagnosed with uterine fibroids. When Stella arrived months early, they were astounded by her ability to keep growing stronger. And when her doctors discovered a buildup of cerebral spinal fluid ... Read More about A seat at the table: One family’s story of finding advanced care for hydrocephalus
‘Supported and heard’: Harven gets care for an anorectal malformation
Like lots of 3-year-olds, Harven Gifford has a great imagination. Lately, he’s taken to roaring loudly and pretending that he’s a lion. But it wasn’t long ago that his parents, Heather and Brian, had to be Harven’s voice, when an unexpected health concern turned them into strong advocates for their son. Although Harven’s delivery went ... Read More about ‘Supported and heard’: Harven gets care for an anorectal malformation
Healing the heart, mind, and spirit
For most of her life, Siena Tancredi worried about her heart beating too fast. She has long QT syndrome, an inherited condition that affects the heart’s electrical rhythm and can cause fast, erratic heartbeats. From the time she was diagnosed at age 10 and into adulthood, she avoided any situation that would potentially cause her heart ... Read More about Healing the heart, mind, and spirit