Archive for second opinion
Making a change: After a second opinion for spina bifida care, Sydney is thriving
At almost 10 years old, Sydney MacKay is sassy, spunky, and wants to be as independent as possible. Because she was born with spina bifida, part of that desire for independence means being more involved in her own care. Although Sydney underwent a surgical procedure a few years ago aimed at helping foster that independence, ... Read More about Making a change: After a second opinion for spina bifida care, Sydney is thriving
The power of a second opinion for Merritt’s spina bifida care
In March 2020 — at the height of the COVID-19 lockdown — Jenna, Brian, and their 2-year-old daughter Merritt were practically the only passengers on their flight from Charlotte to Boston. Waiting for them in Massachusetts were Dr. Benjamin Warf, Dr. Carlos Estrada, and other experts from the Spina Bifida and Spinal Cord Conditions Center ... Read More about The power of a second opinion for Merritt’s spina bifida care
A seat at the table: One family’s story of finding advanced care for hydrocephalus
To her parents, everything about 6-month-old Stella is a miracle. Rose and Vlad were ecstatic to learn they were expecting a baby after Rose was diagnosed with uterine fibroids. When Stella arrived months early, they were astounded by her ability to keep growing stronger. And when her doctors discovered a buildup of cerebral spinal fluid ... Read More about A seat at the table: One family’s story of finding advanced care for hydrocephalus
‘Part of the process’: How a second opinion helped Wynn take control of bladder function
Wynton “Wynn” Smith-Webb is “the most inquisitive kid you’ll ever meet,” laughs his mother, Amber. At just 3 years old, he’s intrigued by science, nature, travel, and even medicine. It’s a mindset he might have picked up from Amber, a professor who says she lives “knee-deep” in data every day. So when Wynn recently began ... Read More about ‘Part of the process’: How a second opinion helped Wynn take control of bladder function
It takes a village and the world: Tariq’s care for Tourette syndrome
When your child is sick but you can’t figure out the cause or how to fix it, it can leave you feeling helpless and frustrated. It can also test how far you’ll go for answers. Just ask Salem of the United Arab Emirates (UAE), who moved with his family to Boston so his son Tariq ... Read More about It takes a village and the world: Tariq’s care for Tourette syndrome
Lessons from Emma: Mom shares how RNS has changed their lives
Emma’s journey with the Epilepsy Center at Boston Children’s Hospital began three years ago when she came to Boston Children’s with her parents for help managing her seizures. In Boston, Emma, Lynda, and Danny found answers to their questions, a (temporary) new home, and hope for Emma’s future as she embarked on responsive neurostimulation (RNS) ... Read More about Lessons from Emma: Mom shares how RNS has changed their lives
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 about New year, new face, same spirit: Zoey’s journey with encephalocele and cleft lip care
Chromosomal testing expands options for exploring causes of SIDS
When an infant or young child dies without explanation, it is not uncommon for parents to blame themselves. In some cases, unfortunately, they may be wrongly investigated by the authorities, even as they yearn for answers themselves. Most often, these answers never come. But research is slowly starting to change that. Increasing evidence suggests that ... Read More about Chromosomal testing expands options for exploring causes of SIDS
Seeds of hope for Annie: one family’s story of epilepsy care
Ten-year-old Annie Dinan experienced her first noticeable seizure just before her fourth birthday while riding in the car with her family. “I had never seen a seizure in my entire life,” her mom, Lindsay, says of witnessing Annie lose then quickly regain consciousness. “But somehow, I knew exactly what it was.” Refusing to settle Following ... Read More about Seeds of hope for Annie: one family’s story of epilepsy care
Sudden, unexplained child deaths often have a genetic cause
When a baby or toddler dies without warning, parents often blame themselves. A study at Boston Children’s may provide some insight into sudden, unexplained child deaths and perhaps a measure of closure. It suggests that at least 10 percent of children who die suddenly have an undiagnosed genetic condition that caused or contributed to their ... Read More about Sudden, unexplained child deaths often have a genetic cause