Archive for Fetal Care and Surgery Center
Clara now runs, dances, and sings along to Taylor Swift thanks to a new life-changing heart surgery
The time had finally come. Only two weeks after a transformative heart operation at Boston Children’s, 11-year-old Clara Portnoy stood in a sprinter’s starting position on an open stretch of grass during her school’s field day. Surrounded by classmates and teachers, she was ready to go. Born with a condition in which the structures on ... Read More about Clara now runs, dances, and sings along to Taylor Swift thanks to a new life-changing heart surgery
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
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 partner through amniotic band syndrome: Jace’s story
Jace is a happy, energetic 9-month-old whose big brown eyes light up a room. He’s adored by his parents, Kait and Evan, who not only delight in being first-time parents but are also incredibly appreciative of the care that helped save their son. It was care that took a village, Kait and Evan say — ... Read More about A partner through amniotic band syndrome: Jace’s story
Guided by her own experience, one mom navigates Stickler syndrome with her children
Aimee is more than just Mum to three-year-old Arwen and one-year-old Cedric; she’s their guide to navigating Stickler syndrome, a genetic connective tissue disorder that can cause an underdeveloped jaw and airway obstruction (collectively known as Robin sequence), as well as cleft palate, vision and hearing difficulties, and other findings. As a carrier herself, Aimee ... Read More about Guided by her own experience, one mom navigates Stickler syndrome with her children
Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
Shannon’s journey through a challenging pregnancy with TTTS (twin-twin transfusion syndrome) was, as she puts it, an emotional rollercoaster. In addition to the usual first-time parent jitters and the unexpected news of twins, Shannon and Mike navigated the emotional ups and downs of the rare pregnancy complication. TTTS put their twins at severe risk of ... Read More about Finding comfort and answers for twin-twin transfusion syndrome: Shannon’s story
After surgery for heart condition tetralogy of Fallot, James is all joy
Warriors come in all shapes and sizes. Some even smile. In the Irvine family, the lead warrior is a happy one: 6-month-old James, whose cheeriness hides the difficult medical journey he had in the first few months of life. “I have been told by many people that James is an inspiration,” says his mom, Heidi. ... Read More about After surgery for heart condition tetralogy of Fallot, James is all joy
Rowan the Remarkable: Defying the odds with CPAM
This is the story of a baby named Rowan and his remarkable journey of beating the odds after doctors discovered a potentially fatal mass on his lung in utero. This is also the story of his mother, Casey, who fought for him every step of the way, and the medical professionals whose collaboration and planning ... Read More about Rowan the Remarkable: Defying the odds with CPAM
From ECMO to an active childhood: Nolan’s journey with congenital diaphragmatic hernia
Nolan Griffin knows how to use a stethoscope and rarely enters Boston Children’s Hospital without his medical kit. But Nolan isn’t a doctor — at least not yet. For now, the busy 2-year-old is a patient in the hospital’s Congenital Diaphragmatic Hernia Center, where he’s been receiving care since before he was born. Although Nolan’s ... Read More about From ECMO to an active childhood: Nolan’s journey with congenital diaphragmatic hernia
Pushing the envelope for Eoin: Our family’s experience with esophageal atresia
When I recently brought my son, Eoin, to Boston Children’s for an appointment, we ran into Dr. Farokh Demehri on the bridge from the parking garage. We smiled, laughed, and talked about how nice it was to see each other. It was a simple meeting, but one I had dreamed about for so long: I ... Read More about Pushing the envelope for Eoin: Our family’s experience with esophageal atresia