Archive for craniofacial
New year, new face, same spirit: Zoey’s journey with encephalocele and cleft lip care
Seven-year-old Zoey loves school, her friends, and everything unicorn. She’s outgoing and happy and has an eye for looking her best. “She loves getting her nails done,” says her mother, Shana. “She’s straight diva.” Talking with Zoey and her mom, you can’t help but be inspired by their positive spirit, care toward others, and general ... Read More
Weathering the storm of Apert syndrome: João’s story
After a “perfect” pregnancy in 2017, Natalia and Igor of Brazil were excited to meet their third child. They were shocked when João was whisked away moments after delivery. “Up until the day before he was born, everything seemed very normal,” says Natalia. “But once he arrived, we could see immediately that something was wrong: ... Read More
Superando as dificuldades da síndrome de Apert: a história do João
Depois de uma gravidez “perfeita” em 2017, os brasileiros Natália e Igor estavam emocionados por conhecer seu terceiro filho. Eles ficaram chocados quando os médicos arrebataram João uns instantes após o parto. “Até o momento em que ele nasceu, tudo parecia muito normal”, afirma Natália. “Mas quando ele chegou, imediatamente percebemos que havia algo errado: ... Read More
Sonny’s story: How an online Apert syndrome community set one family on a path to Boston
Sonny Daniel has had a busy summer. Between traveling, camp, and time with family and friends, this 4-year-old has constantly been on the go — something his parents, Kellie and Josh, are incredibly grateful for. Their gratitude stems a lot from seeing how far Sonny’s come in his journey with Apert syndrome, a genetic disorder that ... Read More
There’s no stopping Jack: His journey with craniosynostosis
Jack is almost 2 years old and loves to swim, chase his older sister around the house, and just bring lots of laughs to everyone he meets. For such a happy kid, he’s had an uphill battle to get to this point — starting when he was born. “Something wasn’t right with the shape of ... Read More
Miles for Jack: Robin sequence and the bond between a family and doctor
For runners and non-runners alike, next week’s Boston Marathon is extra special. It marks a beloved tradition for the city, and for many, it’s a chance to once again run for those who can’t and bring awareness to causes worth fighting for. For 6-year-old Jack Ryan, this year’s marathon is a chance to cheer on ... Read More
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
Maisie’s story: Our journey with Apert syndrome
Our daughter Maisie is 4 years old. She loves riding her bike, baking, jumping on the trampoline, and keeping up with her older sister, Eliza. She’s also especially skilled at peeling hard boiled eggs. We learned prenatally at 18 weeks that something was going on with Maisie’s development. My doctors suspected craniosynostosis, a condition where the ... Read More
Minimally invasive surgery safe and effective for craniosynostosis
Traditional treatment for children with craniosynostosis — a condition in which the bones of the skull grow together too early in the child’s development — usually involves an extensive open craniectomy surgery with a incision to release the fused bones. But a study from physicians in the Cleft and Craniofacial Center at Boston Children’s Hospital ... Read More
Diving deep: Understanding skeletal conditions with fish models
From fragile ice fish deep in the Antarctic Ocean to flying fish gliding above the Caribbean sea, fish have evolved a fascinating variety of skeletal traits. These traits not only help them adapt to their environments, they are also providing genetic insights into rare human skeletal disorders. Fish are not as genetically different from us ... Read More