Archive for Ellen Greenlaw
Violet is blossoming five years after Tessier cleft surgery
In October 2014, Violet and her parents traveled from their home in rural Oregon to Boston Children’s Hospital for a life-changing surgery. Violet, who was born with an extremely rare and serious craniofacial anomaly, called a Tessier cleft, needed an operation to close the gap in her facial bones. After nine hours in the surgical ... Read More about Violet is blossoming five years after Tessier cleft surgery
Tagged: complex care, craniofacial, neurosurgery
Amelia makes a special connection with her EEG tech
Amelia arrived at Boston Children’s Hospital in August with a present in her small hands. The gift was for one of Amelia’s favorite people at the hospital, electroencephalographic (EEG) technician Katie Tucker. Tucker has been Amelia’s primary EEG tech since she was just 7 months old. “We first traveled up to Boston Children’s from New ... Read More about Amelia makes a special connection with her EEG tech
Tagged: epilepsy, neurology, neurosurgery
After beating the odds, Joey dreams of Hollywood
Joey Manzo’s biggest dream is to travel to Hollywood to meet Ellen DeGeneres. Given how many dreams he’s already made a reality, it’s likely one day he’ll make that happen too. DiGeorge syndromeDiGeorge syndrome, also called 22q11.2 deletion syndrome, is a genetic condition caused by missing a part of chromosome 22. It can cause a ... Read More about After beating the odds, Joey dreams of Hollywood
Tagged: bach, congenital heart defect, heart, heart center, heart patient
Sofie’s story: A new gene therapy treatment for SMA
Sofie Petrovická sits up in the exam room, smiling and laughing with her physical therapist, Elizabeth Maczek. Though she’s just over a year old, sitting on her own is no minor feat for Sofie — in fact, it’s nothing short of a miracle. Sofie was just 3 months old when she was diagnosed with spinal ... Read More about Sofie’s story: A new gene therapy treatment for SMA
Tagged: gene therapy, neurology, rare disease, spinal muscular atrophy
Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Ellery was a normally developing 2-year-old when her skills took a dramatic shift backwards last winter. “She started wobbling when she walked, like someone who had had a few beers,” says her mom, Maura. “Then she developed tremors in her hands, couldn’t put a spoon to her mouth and she stopped playing with any of ... Read More about Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Improving developmental care for infants in the Cardiac Intensive Care Unit
Infants born with congenital heart disease (CHD) are some of the most fragile patients, often requiring surgery or other interventions in the first few months after birth. They also face a higher risk of developmental delays, learning disabilities, and behavioral problems than children born with a healthy heart. To help mitigate these developmental challenges, a ... Read More about Improving developmental care for infants in the Cardiac Intensive Care Unit
Innovations in transcatheter valve replacement
The Cardiac Catheterization Program at Boston Children’s Hospital has been at the cutting edge of pediatric care for more than 60 years, developing and refining innovative catheterization techniques and procedures. “The program was built on a culture of collaboration, training, and innovation,” says Diego Porras, MD, FAAP, program chief. “We continue to foster new ideas ... Read More about Innovations in transcatheter valve replacement
Tagged: cardiac catheterization, heart
Women in Medicine Month: Celebrating women who paved the way
September is Women in Medicine Month, the perfect time to acknowledge the many brilliant, talented, and passionate women who care for our patients and innovate new discoveries every day at Boston Children’s Hospital. In honor of Boston Children’s 150th anniversary, we’d like to recognize a few of the many trailblazers who helped pave the way. ... Read More about Women in Medicine Month: Celebrating women who paved the way
Tagged: culture
A biventricular repair helps California girl thrive
Even before their daughter, Elyse, was born, Amanda and Ian Primavera knew their road would be a little rocky. But they had no idea how hard they’d have to push to get the care they wanted for their daughter. Ultimately, an online support group and a little perseverance helped them find the answers and treatment ... Read More about A biventricular repair helps California girl thrive
Grace: Developing her inner ninja after brain surgery
The McGuigans were enjoying a family dinner at a favorite restaurant last October when their lives took an unexpected turn. In the middle of their meal, 4-year-old Grace suddenly developed a strange look on her face and started rhythmically moving her wrist. When she didn’t respond to her name, her parents, Christina and Nathan, knew ... Read More about Grace: Developing her inner ninja after brain surgery
Tagged: cavernous malformation, neurosurgery