Archive for spina bifida
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
Un hito en la Costa Este: El bebé Isaac está evolucionando después de una reparación fetoscópica por minilaparotomía de espina bífida abierta
Isaac Suardi aún no lo sabe, pero ya ha hecho historia. Recién nacido en julio, es el primer bebé en la Costa Este en someterse a una reparación quirúrgica fetoscópica por minilaparotomía de un defecto del tubo neural (DTN) mientras aún está en el útero de su madre. “Sinceramente, no pensamos demasiado en eso”, admite ... Read More about Un hito en la Costa Este: El bebé Isaac está evolucionando después de una reparación fetoscópica por minilaparotomía de espina bífida abierta
Baby Isaac is thriving after an East Coast first for a neural tube defect
Isaac Suardi doesn’t know it yet, but he’s already made history. Just born in July, he’s the first baby on the East Coast to undergo mini-laparotomy fetoscopic surgical repair of a neural tube defect (NTD) while still in his mother’s womb. “Honestly, we didn’t think too much about that,” admits his father, Chris. “We knew ... Read More about Baby Isaac is thriving after an East Coast first for a neural tube defect
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
Perfecting the craft of modeling disease in stem cells: Dosh Whye
Part of an ongoing series profiling researchers at Boston Children’s Hospital. Dosh Whye has always wanted to make peoples’ lives better, but he never imagined that tending to stem cells in a lab seven days a week would be the way he would do it. Now, as an assistant director of the Human Neuron Core ... Read More about Perfecting the craft of modeling disease in stem cells: Dosh Whye
Lifechanging surgery brings Ann-Raleigh relief from VUR — and some new ‘besties’
When Ann-Raleigh Murthy travels to Boston from her home in Louisiana, she has a list of “must-dos.” Among the highlights: Ride the swan boats in the Public Garden, swing by her favorite chocolate shop, go shopping — and visit with Dr. Carlos Estrada, Boston Children’s urologist-in-chief. Dr. Estrada, along with neurosurgeon Dr. Benjamin Warf, “are two ... Read More about Lifechanging surgery brings Ann-Raleigh relief from VUR — and some new ‘besties’
On her own terms: Robot-assisted procedure gives Sage more independence
At 19, Sage Nault has had multiple surgeries, aimed at addressing challenges related to myelomeningocele, the most severe form of spina bifida. But it’s her most recent operation that might have the greatest impact on her quality of life. Known as a Mitrofanoff appendicovesicostomy and a Malone antegrade continence enema (MACE), the combined procedure has ... Read More about On her own terms: Robot-assisted procedure gives Sage more independence
Tough yet flexible: Biologically inspired adhesive may improve fetal surgery
In children with spina bifida, the neural tube that forms the spinal cord and brain doesn’t close during early prenatal development. That leaves the nerves of the spinal cord exposed to potential damage from fetal movement and the surrounding amniotic fluid. While surgeons can repair spina bifida soon after birth, the ideal would be to ... Read More about Tough yet flexible: Biologically inspired adhesive may improve fetal surgery
Another level of gratitude: Spina bifida care for Liam
Most parents first walk through the doors of Boston Children’s Hospital seeking answers about their child’s health. But until recently, when Mary Holleran arrived at the hospital, she was simply beginning another day at work. A nurse practitioner, she’s been on staff at Boston Children’s for more than a decade, much of it spent caring ... Read More about Another level of gratitude: Spina bifida care for Liam
Urodynamics testing: What to expect
If your child has been diagnosed with a colorectal or pelvic malformation, they may also experience urological problems such as vesicoureteral reflux, hydronephrosis, or neurogenic bladder. These conditions can make it difficult to store or empty urine properly, leading to incontinence and accidents. “For these reasons, a urologist is often involved in the care of ... Read More about Urodynamics testing: What to expect