Author: Ellen Greenlaw

Celebrating our superheroes, princesses, ghouls and goblins

This Halloween, we take a moment to celebrate the many children who have inspired us over the past year with their stories of courage, determination and general all-around amazingness.

  • Arianna, Dorothy and older brother, Colin

Arianna, dressed as Elmo, continues to gain strength after a new treatment for type 1 spinal muscular atrophy (SMA). Ballerina Dorothy, is creating her own song-and-dance routines after treatment for  jejunal atresia in the Center for Advanced Intestinal Rehabilitation (CAIR). Colin is flying high back home in Colorado after a complete biventricular repair for his several complex congenital heart defects.

Much like ET, Jack loves making phone calls, especially now that he’s said goodbye to his G-tube. Vampire Joey is working on finding his voice, with help from the Cardiac Neurodevelopmental Program.

Princess Kannon, first-grade fashionista, is off the charts in terms of development after surgery for hydrocephalus. Dr. Keira is ready to follow in the footsteps of her clinicians in the Pacemaker and ICD Program, who successfully treated her uncommon variant of vasovagal syncope. 

Wonder Woman Mae, who has Down syndrome and had surgery to repair a hole in her heart, gives out Halloween hugs. Princess Nora, who was treated for midaortic syndrome, prepares to go trick-or-treating with her mom.

Back home in England after surgery to remove a cardiac tumor, Oliver dons his scary skeleton costume and holds his trick-or-treat basket high. Obsessed with all things superhero, Patrick is headed to “infinity … and beyond” as Buzz Lightyear after recovering from a rare bilateral cerebellar strokeMae and older sister Rosie celebrate Halloween as a frog and a princess after Mae’s double lung transplant through the Lung Transplant Program.

Reagan has bounced back from surgery for an anorectal malformation to be the cutest skeleton on the block. Sonia is truly a Wonder Woman, as she and her mom help save hearts a world away. Stella, who has spastic diplegia cerebral palsy (CP), will use her special wheelchair to roam her neighborhood dressed as Elsa.

We wish every princess, superhero, ghoul and goblin a fun and safe Halloween.

Read Full Story

Kayla’s back on her feet after Cardiac Fitness Program

Kayla, who has Marfan syndrome, hangs out at the beach.
PHOTO COURTESY OF MADDY GRAVES PHOTOGRAPHY

Like many teenagers, 17-year-old Kayla Nelson attends high school and has a part-time job — hers is at a local bagel shop. But for Kayla, these “normal” teenage responsibilities were nearly impossible just a couple of years ago.

Read Full Story

Helping heart patients overcome developmental issues

Focus on Boston Children's Cardiac Neurodevelopmental Program
PHOTO ILLUSTRATION: PATRICK BIBBINS/BOSTON CHILDREN’S HOSPITAL

If you have a child with congenital heart disease (CHD), you’re likely well-versed in the medical issues your child may face. But many parents don’t realize their children born with CHD may also be at risk for developmental problems.

Read Full Story

Having Faith: A novel approach to heart surgery

Faith, who had heart surgery for pulmonary atresia using her own umbilical cord as a shunt, poses in a chair. When Rachel and Rudy Fasano of New Haven, Connecticut learned they were having their first baby after three years of trying, they were overjoyed, as were their families. At Rachel’s 15-week ultrasound to learn their baby’s sex, both grandmothers were also in tow, eager to hear the news. But the visit delivered some unexpected results.

Read Full Story