Patient Stories
A mother’s quest to find a cure for Shwachman-Diamond syndrome
Poppy Inez Hawkins is a born entertainer. Her favorite song is “Fire” by Kasabian. She loves kitchen disco. And she can frequently be found staging performances in the Hawkins-family living room at their home in London, England — free tickets provided and clapping encouraged. “She talks to everyone and will tell anyone who wants to ... Read More about A mother’s quest to find a cure for Shwachman-Diamond syndrome
Research
Someday, this prosthetic heart valve might be the only one a child needs
More than 330,000 children worldwide are born with a heart valve defect, and millions of others develop rheumatic heart disease requiring early valve replacement. Current prosthetic heart valves are fixed in size, so typically need to be replaced every few years as a child grows. For children receiving their first replacement before age 2, that ... Read More about Someday, this prosthetic heart valve might be the only one a child needs
Patient Stories
Anabella’s story: Hope for treating malignant rhabdoid tumors
Watching her deftly maneuver a playground with a huge smile on her face makes it hard to imagine that Anabella Trillo, 3, once faced challenges far greater than a jungle gym. In fact, she has already endured surgery, radiation, chemotherapy, and a stem cell transplant for one of the most aggressive pediatric cancers: a malignant rhabdoid ... Read More about Anabella’s story: Hope for treating malignant rhabdoid tumors
Patient Stories
Taking charge: Emma perseveres with laryngeal cleft
Emma Morris is “a pistol,” says her mother, Sarah. “She’s a spitfire, passionate and caring.” But the 11-year-old gets anxious, too — and for an understandable reason. She’s been in and out of the hospital since she was a newborn. In fact, Sarah estimates that her daughter has spent more than 400 nights at Boston ... Read More about Taking charge: Emma perseveres with laryngeal cleft
Our Community
Staff Spotlight: Meet Sue-mei Portugues
Sue-mei Portugues is the global patient access manager for the Department of Cardiac Surgery at Boston Children’s Hospital. What’s your role at the hospital? I assist some of the families that come from all over the world for cardiac surgeries throughout the second opinion process. I’m often the first person they connect with when they reach ... Read More about Staff Spotlight: Meet Sue-mei Portugues
Clinical Care
How do you implement change? Lessons from a QI project in the NICU
Kristen Leeman, MD, is Director of Quality in the Division of Newborn Medicine and Associate Medical Director of the Neonatal Intensive Care Unit at Boston Children’s Hospital. What if you were taught to do things a certain way, the way things were always done, and then a randomized clinical trial comes out supporting a different ... Read More about How do you implement change? Lessons from a QI project in the NICU
Research
CRUSH: Developing a sexual education program for young adults on the autism spectrum
For many young adults on the autism spectrum, developing and maintaining positive intimate relationships can be challenging. But collaboration between Boston Children’s Hospital and UMass Boston hopes to provide some on-point guidance through a new initiative¾the Competence in Romance and Sexual Health (CRUSH) program, aimed at developing a new sex education curriculum for young adults ... Read More about CRUSH: Developing a sexual education program for young adults on the autism spectrum
Health and Parenting
Relationship talks: Staying together through a child’s illness
Among the many stresses of having an ill or injured child, parents often feel a strain on their marriage. Whenever she can, clinical social worker Katherine Preston, LICSW, reassures families that a child’s illness does not automatically spell the end of the parents’ relationship. Based on studies of families facing childhood cancer and diabetes, Preston ... Read More about Relationship talks: Staying together through a child’s illness
Research
Migraine prevention in children and teens: Weak support for medication
Several medications successfully treat an active migraine. But a review of the medical literature from Boston Children’s Hospital finds only weak evidence that drug treatment prevents migraine in children and adolescents. Only two medications — topiramate and propranolol — showed any difference in preventing migraine in this age group compared with a placebo. Joe Kossowsky ... Read More about Migraine prevention in children and teens: Weak support for medication
Research
Going into science: Women scientists at Boston Children’s offer advice to girls
In honor of the International Day of Women and Girls in Science (February 11), we invited women scientists at all stages of their careers at Boston Children’s Hospital to share their scientific agendas. Here is some of what they had to say. The scientists also offered their advice for girls interested in entering the field. ... Read More about Going into science: Women scientists at Boston Children’s offer advice to girls