Blog

Helping your child understand puberty

We all remember the changes — and awkwardness — of puberty. But helping your child navigate puberty is a whole different matter. For answers, we turned to Boston Children’s Primary Care Alliance physician Caitlyn Hark, MD, at Framingham Pediatrics, and Frances Grimstad, MD, a pediatric and adolescent gynecologist in the Division of Gynecology at Boston ... Read More

Fighting for — and with —Kiara through congenital diaphragmatic hernia care

Although Andrea and Kevin hadn’t planned on having a third child, the news that they were expecting another baby was a welcome surprise. “Every child is a blessing, so we were still very excited,” says Andrea. But soon there was worrisome news: At her 20-week ultrasound, Andrea learned that her daughter Kiara would be born ... Read More

Sunshine and swimming: Patrick’s fun life after a minimally invasive thoracotomy for AV canal defect

Life had seemed normal for Patrick* and his family in June 2025. He celebrated his second birthday and was reaching all the expected milestones for children his age. But just months after he blew out the candles on his birthday cake, Patrick’s pediatrician heard a heart murmur. Further testing revealed he had a partial atrioventricular (AV) ... Read More

Breakthrough study finds possible causes of cardiac fibrosis in HLHS

Many children who have hypoplastic left heart syndrome (HLHS) — one of the most severe congenital heart defects (CHDs) that affect circulation — also develop a condition in which the inner lining of their left ventricle thickens and further disrupts heart function. The possible causes of the condition, a cardiac fibrosis known as endocardial fibroelastosis (EFE), have long been ... Read More

Finally a chance to breathe: Christiana gets care for Hirschsprung’s disease

When Jana and Jeffrey noticed that their week-old daughter, Christiana, was throwing up, had a swollen stomach, and was unable to poop, the symptoms seemed awfully familiar — especially to Jeffrey. “I was treated for Hirschsprung’s disease as a child,” he explains. This condition occurs when some of the nerve cells in the colon, and ... Read More

‘They had a plan’: How Sophia’s parents found care for ROHHAD syndrome

Five-year-old Sophia is a big fan of stickers: At a recent visit to Boston Children’s Hospital, she eagerly covered her hands, bag, and water bottle with shiny stickers of everything from Hello Kitty to a whale. From her shy, silly demeanor and big smile, you’d never know that she’s been coping with a rare neuroimmunological ... Read More

Rethinking platelet transfusions in newborns

Platelet transfusions have long been central to neonatal intensive care. Between 15 and 35 percent of hospitalized newborns receive at least one, with rates highest (about one in three) among the most premature due to thrombocytopenia and their elevated risk of intraventricular hemorrhage. For decades, the logic has been sound: transfuse platelets, typically from adult ... Read More

New approach to gene therapy helps smooth road for people with sickle cell disease

Gene therapy has been transformative for individuals with sickle cell disease, a genetic condition caused by a mutation in the adult form of hemoglobin, the protein in red blood cells that carries oxygen throughout the body. As a result, red blood cells stiffen and change shape, leading to pain, anemia, blood clots, and other health ... Read More

My own secret superpower: Jocelyn’s journey with C3 glomerulopathy

When Jocelyn Bush was 13, she started noticing minor swelling around her eyes. Not thinking much of it, she went about her life as usual. But by the start of her freshman year of high school, the swelling had spread all over her body. As a multisport athlete in soccer, track, and volleyball, not being ... Read More

Finding answers and care for a rare movement disorder: Aisha’s experience with deep brain stimulation

For nearly a decade, Aisha’s family looked for answers about a disease they couldn’t name. Born in Bahrain in 2006, Aisha was about a year old when her mother, Mariam, noticed involuntary movements in her face and lips. As she grew, Aisha showed delays in walking, speech, and other developmental milestones. Despite years of appointments ... Read More

العثور على إجابات ورعاية لاضطراب حركي نادر: تجربة Aisha مع التحفيز العميق للدماغ

لقرابة عقد، بحثت عائلة Aisha عن إجابات لمرض عجزوا عن تسميته، بدأ منذ طفولتها المبكرة. ولدت Aisha في البحرين عام 2006، وكانت تبلغ من العمر عامًا واحدًا تقريبًا عندما لاحظت والدتها، Mariam، حركات لاإرادية في وجهها وشفتيها. ومع نموها، ظهر لدى Aisha تأخر في المشي والكلام والجوانب التطورية الأخرى. ورغم سنوات من المراجعات والفحوصات الطبية ... Read More