Stories about: Advanced Fetal Care Center

Down syndrome: Reimagining what’s possible

Ella kisses baby Juila on the cheek.
Photo credit: Nicole Starr

I first met Ella Gray Cullen in the Advanced Fetal Care Center (AFCC) of Boston Children’s Hospital, shortly after she had received a prenatal diagnosis of Down syndrome. Like many parents expecting babies with conditions that can be diagnosed prenatally, she wanted to know more.

We talked about the additional medical screenings that would be recommended for her daughter to evaluate for cardiac defects and other conditions that are more common in children with Down syndrome. We discussed the developmental supports through Early Intervention and school that would be available to help her daughter learn and develop to her best ability. And, we talked about breastfeeding.

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A ‘superstar’ homecoming: Julia’s journey for bladder exstrophy care

Julia, born with bladder exstrophy, is pictured being held by her mom and dad

Julia Ryan was born on March 2, but her journey to Boston Children’s Hospital began months before her birth.

During Tori Ryan’s pregnancy, doctors near her home in South Carolina diagnosed her unborn child, Julia, with bladder exstrophy, a rare and complex birth defect where the bladder develops inside out and is exposed outside of the body.

“There were a lot of tears,” says Tori’s husband, Sean, of receiving the news about their daughter. “It was hard. We had to balance our own worry with the excitement our two older daughters felt about having a little sister.”

Their concern for their unborn baby led the Ryans to Boston Children’s. 

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Second opinion gives unborn baby second chance

fetal second opinionSeven-month-old Charlotte Bent is hitting all of her developmental milestones — smiling, laughing, playing peek-a-boo, bearing weight on her legs. Her parents, Jennifer and Keith, are overjoyed.

“It’s a complete 180-degree turn from where we thought we would be this time last year,” says Jennifer.

After struggling to conceive their second child, the couple was thrilled when Jennifer became pregnant. The results of genetic testing were normal and confirmed they would be welcoming a daughter in April.

Jennifer felt the baby’s first kicks on Nov. 23, 2015.

The next day, she was scheduled for an anatomy scan. “At first, everything seemed normal,” recalls Jennifer. But as the obstetrician was helping her from the exam table, he looked at Jennifer. “I have some concerns,” he told her.

“My heart dropped,” she says. Joy turned to devastation.

“I think your baby is missing part of her brain,” the obstetrician said.

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Meet Ryan: The boy who grew his own esophagus

Dr. Rusty Jennings, Ryan Page, Dr. John Foker
Dr. Rusty Jennings, Ryan Page, Dr. John Foker

Eleven-year-old Ryan Page is a budding trombone player whose favorite foods include candy, popcorn and hot dogs. “Ryan loves any choking hazard,” jokes his mother Tracy.

When Ryan was born, few would have predicted he would be able tolerate these foods or master the trombone. “His doctors told us he had the longest gap they had ever seen in a baby with esophageal atresia,” recalls Tracy. Ryan was born with a nearly 4-inch gap between the top and bottom parts of his esophagus.

“This is a kid whose predestination based on standard therapy was chronic aspiration (breathing food, liquid or vomit into the airway), chronic lung disease and multiple operations throughout his life. Instead, he’s a normal kid. That’s the miracle of the Foker process,” says Dr. Rusty Jennings, director of Boston Children’s Hospital’s Esophageal Atresia Treatment Center.

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