Blog | Page 42 of 158 | Boston Children's Answers

Cracking the code on Kleefstra syndrome: It takes a community

Posted on February 28, 2023 by Nancy Fliesler | Patient Stories, Research

Tags: developmental milestones, intellectual disability, learning disabilities, neurology, rare disease

Paul Terry is a staunch advocate for people with rare diseases — but researchers were only able to put a name to his condition five years ago. It was an answer he and his family had long sought. When Paul was a baby, his parents saw that he wasn’t hitting all his milestones. Their pediatrician ... Read More

Tagged: developmental milestones, intellectual disability, learning disabilities, neurology, rare disease

Social and emotional health in high school

Posted on February 27, 2023 by Joanne Barker | Health and Parenting

Tags: community health, mental health

Sarauna Moore has a unique perspective on students’ emotional and behavioral health. As part of the Boston Children’s Hospital Neighborhood Partnerships team, she is a fixture at Boston Arts Academy (BAA), a public high school for the visual and performing arts. When in-person classes resumed in 2021 after a year of remote learning, she noticed ... Read More

Tagged: community health, mental health

Treatment for a complex congenital heart defect gives Alyvia ‘endless energy’

Posted on February 23, 2023 by Albert McKeon | Patient Stories

Tags: biventricular repair, cardiac surgery, congenital heart defect, heart, heart center, heart patient, tricuspid atresia

She may be just 3 years old, but Alyvia Parker is already making a difference for other kids with congenital heart defects (CHD). This month, she was a guest of honor at Gulfport City Hall, where, thanks to her and her mom’s advocacy, their hometown lawmakers proclaimed it Congenital Heart Defect Awareness Week. The two also ... Read More

Tagged: biventricular repair, cardiac surgery, congenital heart defect, heart, heart center, heart patient, tricuspid atresia

I’ve been there, too: What my baby’s tumor taught me as a NICU nurse

Posted on February 22, 2023 by Alex Armstrong | Patient Stories, People

Tags: blood disorder, cancer, nicu, nursing, vascular anomalies

I had a toddler at home when I found out I was pregnant with my twins, Hannah and Sophie. Since I had already had a baby, I thought I knew what to expect during my pregnancy. I also work in the neonatal intensive care unit (NICU) at Boston Children’s Hospital, so I thought I was ... Read More

Tagged: blood disorder, cancer, nicu, nursing, vascular anomalies

Research offers guidance on genetic testing for cerebral palsy

Posted on February 21, 2023 by Nancy Fliesler | Clinical Care, Specialty Care

Tags: cerebral palsy, genetics and genomics, neurology, research

A recent meta-analysis confirms what a small study at Boston Children’s found last year: About 1 in 4 children with cerebral palsy (CP) who had DNA testing had genetic variants likely to have caused or contributed to their condition. With the new data, the researchers have expanded the traditional view of the condition and offer ... Read More

Tagged: cerebral palsy, genetics and genomics, neurology, research

A different kind of hearing: Caleb’s cochlear implant

Posted on February 17, 2023 by Joanne Barker | Patient Stories

Tags: autism, cochlear implants, hearing, otolaryngology

Caleb recently told his mother, “I think I’m going to write my own stories.” This news didn’t surprise his parents, Wendy and Chris. For several years, 8-year-old Caleb has filled notebook after notebook with pictures and stories. His stack of favorite books includes Boxcar Children and The Chronicles of Narnia. But given some of his ... Read More

Tagged: autism, cochlear implants, hearing, otolaryngology

Reconstructing a chest wall, one virtual step at a time

Posted on February 16, 2023 by Albert McKeon | Clinical, Research

Tags: cardiac research, cardiac surgery, heart center, orthopedics, otolaryngology, plastic surgery, pulmonology, surgery

It takes a village of clinicians and engineers to reconstruct a chest wall. It also takes a lot of 3D modeling. A young girl needed to have her chest wall restructured to stop life-threatening airway obstruction. To ensure the complicated operation would be efficient, Emily Eickhoff, a Boston Children’s biomedical engineer, partnered with a team ... Read More

Tagged: cardiac research, cardiac surgery, heart center, orthopedics, otolaryngology, plastic surgery, pulmonology, surgery

From Pakistan to Boston: Faiz finally found help for his complex heart condition

Posted on February 15, 2023 by Albert McKeon | Patient Stories

Tags: biventricular repair, cardiac catheterization, cardiac surgery, congenital heart defect, double outlet right ventricle, heart, heart center, heart patient, international, pulmonary vein stenosis

Don’t let his shy smile fool you. In his hometown of Lahore, Pakistan, 6-year-old Muhammad Butt is known by the nickname “Faiz the fighter.” Faiz had long defied the predictions of local doctors who said the heart surgery he needed would be complicated and instead advised his parents to enjoy the time they had with ... Read More

Tagged: biventricular repair, cardiac catheterization, cardiac surgery, congenital heart defect, double outlet right ventricle, heart, heart center, heart patient, international, pulmonary vein stenosis

Pieces at work: Luca’s experience with Apert syndrome

Posted on February 13, 2023 by Katie Paradis | Patient Stories

Tags: apert syndrome, brain health, craniofacial, international, plastic surgery

Luca Paolacci, 24, is pursuing his bachelor’s degree in mechanical engineering. It’s a serendipitous major given that it studies how pieces come together to create specific force and movement, and Luca’s personal story is a study of the opposite: how creating separation can build strength, movement, and dexterity. “It has always fascinated me how tiny ... Read More

Tagged: apert syndrome, brain health, craniofacial, international, plastic surgery

Researchers look for ways to start puberty ‘on time’

Posted on February 10, 2023 by Albert McKeon | Clinical, Research

Tags: adolescent medicine, endocrinology, primary care

Children who experience early puberty or delayed puberty may be at risk of having shortened height as adults. They may also feel emotionally unprepared for the changes of puberty, and may feel self-conscious or experience social anxieties as a result. To address this challenge, Boston Children’s researchers are trying to further the study of an important genetic player in ... Read More

Tagged: adolescent medicine, endocrinology, primary care