Life Affirming: 15th Annual Fetal Family Reunion (2011) | The Children's Hospital of Philadelphia

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Life Affirming

15th Annual Fetal Family Reunion draws hundreds of families, friends and clinical personnel together to recognize children with birth defects

There were children everywhere, doing everything. Some danced with the Philly Phanatic. Others climbed a rock wall or tackled the inflatable obstacle course. Many got their faces painted as princesses, pirates and tigers.

While a few of the youngest slept quietly in strollers, most children and teens couldn’t wait to greet each new adventure and reconnect with old friends.

More than 1,000 parents, children and staff turned out June 26 for the 15th Annual Center for Fetal Diagnosis and Treatment Family Reunion at The Children’s Hospital of Philadelphia.
And while there was plenty of pint-sized fun, almost every family took a few minutes to say hello, hug and high-five the doctors and nurses from CHOP’s Center for Fetal Diagnosis and Treatment who cared for them – in some cases – even before they were born.

“The fetal family reunion is our team’s favorite day of the year,” said N. Scott Adzick, MD, Surgeon-in-Chief at CHOP and director of the Center for Fetal Diagnosis and Treatment. “It is truly inspiring to see so many children, who as babies likely could have died, now running around and growing up healthy and strong.”

Charlie, 14, of Woodbury, NJ, was a perfect example. Born with a giant omphalocele that restricted his lung development, the high school student showed no long-term affects as he accompanied the Philadelphia Police Color Guard on the bugle during the reunion’s opening ceremony.

Whether running, skipping or rolling, children raced around the usually quiet courtyard on CHOP’s main campus in Philadelphia, PA.

During the five-hour event made possible by the Lynn Saligman League and Aramark, most youth did it all. They rode the carousel and miniature train. They played carnival games and won prizes. They climbed aboard a fire truck, put on a firefighter’s helmet and petted a police dog.

They ate popcorn and cotton candy. They made spin art and crafts. They competed in dance contests and raced to the top of the rock wall.

Making Memories

At 10:45 a.m., reunion organizers gathered this year’s participants together for a group photo – a yearly ritual since the first family reunion in 1997 when there were only a few patient families.

Treatment Planning Scan
More than 1,000 parents, children and staff turned out June 26 for the 15th Annual Center for Fetal Diagnosis and Treatment Fetal Family Reunion at The Children’s Hospital of Philadelphia. For more photos from the reunion, see our 2011 slide show.
Photos courtesy of Crane Photography.

 

Sitting on the shoulders of her father Robert, 4-year-old Kyleigh could see almost everyone. But the preschooler with braids and colorful barrettes was also getting a little sleepy, so she rested her head on top of her dad’s.Kyleigh
Feel the Rush
Kyleigh, 4, of Camden, NJ, zooms down the slide at the 15th Annual Fetal Family Reunion at The Children’s Hospital of Philadelphia. For more photos from the reunion, see our 2011 slide show.

“This is our fourth reunion,” said Kimberly, Kyleigh’s mom. The family from Camden, NJ, comes back to reconnect with staff who treated the girl’s arachnoid cyst, a sac filled with cerebrospinal fluid that forms near the brain. She needed surgery and a double shunt to drain the excess fluid.

Today, the round-faced little girl is healthy and happy.

“We’re gonna come back to the reunion every year until doomsday,” Kimberly said, smiling up at her daughter. “We’re so glad she’s here and so thankful for everyone at CHOP who helped make that happen.”

Common Bond

Hailing from more than 17 states and three countries, every family at the reunion shared a common goal: To celebrate children treated for birth defects at CHOP.

“It’s really encouraging to be here and see people from all walks of life,” Kimberly said. “Birth defects don’t discriminate and this event highlights that point.”

Birth defects are more common than most people think. In the U.S., 1 in every 33 babies is born with a birth defect such as spina bifida, congenital heart disease, congenital diaphragmatic hernia or twin-twin transfusion syndrome.

Since 1995, CHOP’s Center for Fetal Diagnosis and Treatment has provided care for many families who were told their babies had little chance for survival.

“The families gathered here today represent more than 10,000 expectant mothers we’ve been able to offer hope and support to over the past 16 years,” Adzick said. The annual reunion is an opportunity for families and staff to remember where they’ve been and celebrate how far they’ve come.

Comparing Notes

The reunion also gave a few new patients – expectant parents who’ve recently undergone fetal surgery – a chance to meet families who’ve been through the same uncertainty of birth defects that they are going through now.

“I really wanted to talk to people who’ve been through our situation – to see and talk to children who’ve been though this surgery,” said Elizabeth, a pregnant mom underwent prenatal surgery for spina bifida about three weeks before the reunion.

She and her husband, Chris, both active U.S. military personnel, talked to dozens of families who have been treated at CHOP for various diagnoses and some who had the same groundbreaking fetal surgery.

More parents are investigating whether prenatal surgery to repair spina bifida is the right option for their family since the Management of Myelomeningocele Study (MOMS) was published in February 2011. The landmark federal study, co-led by CHOP, showed fetal surgery for spina bifida improved outcomes for children.

Elizabeth only had to meet three special 8-year-olds – Maggie, Gabrielle and Connor – to see the hope and promise treatment at CHOP has brought to their lives. The trio, from Connecticut, Illinois and Pennsylvania, were the last three to have fetal surgery for spina bifida at CHOP before the MOMS study began in 2003.

From Near and Far

As an internationally recognized leader in fetal diagnosis, fetal surgery and fetal care, the Center for Fetal Diagnosis and Treatment at CHOP draws patients from near and far for specialized care.Jacob and Jonathan
Happy and Healthy
Marlenne and Jacob, of the Bronx, NY, returned to Philadelphia to thank CHOP doctors and nurses for saving the lives of their twin boys. Jonathan and Jacob, now 2 years old, underwent surgery before they were born to correct twin-twin transfusion syndrome. For more photos from the reunion, see our 2011 slide show.

The reunion brought in a similarly diverse crowd. Families traveled across town, across the region, across the country and some even traveled across an ocean to attend the annual event.

Marlenne and Jacob and their 2½-year-old twin boys drove down from their home in the Bronx. When Marlenne was pregnant, doctors in New York discovered her twins had twin-twin transfusion syndrome, a condition in which the blood passes unequally between identical twins that share a placenta. The smaller twin (donor) pumps blood to the larger twin (recipient), causing a condition that can be fatal for both twins if not expertly treated.

Marlenne was referred to CHOP, where she underwent in utero surgery to correct the condition. After surgery, the couple returned home to New York, where Marlenne gave birth to twins Jacob and Jonathan a few months later.

The boys have met many of their developmental milestones and are now receiving early intervention services near their home to prepare them for preschool and more.
“They wouldn’t be here now if it wasn’t for the doctors and nurses at CHOP,” she said. “We can’t thank them enough.”

Kathleen, her husband Vincent and their four children, traveled cross-country from Utah for the reunion.

They’d made the trip to CHOP more than a year before when Kathleen was pregnant with twin girls – one of whom was diagnosed prenatally with congenital diaphragmatic hernia (CDH), a birth defect characterized by the development of a hole in the diaphragm that allows abdominal organs to move into the chest and restrict lung development. CDH occurs in about one in every 2,500 live births and can be fatal.

“For us, Children’s Hospital is an almost sacred place to be,” Kathleen said. “We’re seeing miracles happen here.”  

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