Patient Stories
A rare diagnosis: Zoey’s new smile
After her surgery at Boston Children's for a frontal encephalocele and cleft lip, Zoey, a tutu-lover from Mississippi, is home and thriving.
Research
Pupil dilation and heart rate, analyzed by AI, may offer early autism diagnosis
Autism and other neurodevelopmental disorders often aren’t diagnosed until a child is a few years of age, when behavioral interventions and speech/occupational therapy become less effective. But new research this week in PNAS suggests that two simple, quantifiable measures — spontaneous fluctuations in pupil dilation or heart rate — could enable much earlier diagnosis of ... Read More about Pupil dilation and heart rate, analyzed by AI, may offer early autism diagnosis
Patient Stories
Stella’s story: Winning against neuroblastoma
The Downey family was enjoying the holidays with family in Guatemala in 2017 when their 13-month-old daughter Stella started having unusual symptoms. “She was very clingy towards me and not acting like herself,” says Stella’s mom, Fiorella, a child life specialist at Boston Children’s Hospital. “It was so extreme that I brought her to the ... Read More about Stella’s story: Winning against neuroblastoma
Health and Parenting
Scoliosis bracing: How to support your child
Bracing is a family affair. Every member of the family should be on the same page with regards to the number of hours the brace needs to be worn and how brace wear fits into the child’s schedule.
Patient Stories
From Cape Verde for coordinated CDH care
Most parents have never heard of congenital diaphragmatic hernia (CDH), a rare and potentially life-threatening condition in which a baby is born with a hole in the diaphragm, the muscle that the body uses to breathe. This can cause the intestines and other abdominal organs to move into the chest, which prevents normal lung development. ... Read More about From Cape Verde for coordinated CDH care
Patient Stories
Regina’s journey with HLHS: Four years later
Regina was just 25 days old the first time she made the trip from her home in Mexico to Boston. Regina was born with a serious congenital heart defect called hypoplastic left heart syndrome (HLHS), resulting in the underdevelopment of the left side of her heart. Her doctors in Mexico told her parents it was ... Read More about Regina’s journey with HLHS: Four years later
Research
Tissue models and a gene therapy for a deadly heart arrhythmia
Catecholaminergic polymorphic ventricular tachycardia (CPVT) is a leading cause of sudden death from cardiac arrest in children and young adults. Marked by racing, irregular heartbeats, the inherited arrhythmia is typically silent until a child suddenly collapses and faints, at an average age of 12. The trigger is an adrenaline surge, caused by exercise or emotional ... Read More about Tissue models and a gene therapy for a deadly heart arrhythmia
Patient Stories
Limb-salvage surgery is best option for Andrew
It was quite a spring for Andrew Hedberg. The rising high school sophomore made the varsity golf team and was elected class president for the upcoming school year. Most importantly, the bone cancer that once threatened his left leg and his life remained in remission. All of this validated the decision that Andrew’s family made seven years ... Read More about Limb-salvage surgery is best option for Andrew
Patient Stories
How to have surgery and help others at the same time
Ryan Zanchi and his parents didn’t hesitate when invited to participate in research about spinal surgery. Ryan was diagnosed with idiopathic scoliosis at the age of 13 and had surgery two years later. Now his spine is straighter, and his contributions to science will help other patients for years to come. “Ryan’s surgery went so ... Read More about How to have surgery and help others at the same time
Patient Stories
From fear to hope with CDH
Lyndsay MacNeil is a nurse, but even she — like most parents — had never heard of congenital diaphragmatic hernia (CDH) until she was pregnant with her daughter Shayne. During a routine ultrasound, her clinicians at Brigham and Women’s Hospital detected an anomaly in the fetus, which they suspected was CDH. In this serious condition, ... Read More about From fear to hope with CDH