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Down the Road

Growing Up After Fetal Surgery for Spina Bifida

Since the Management of Myelomeningocele Study (MOMS) results were published in February 2011, more parents are investigating whether prenatal surgery to repair spina bifida is the right option for their family. The landmark federal study, co-led by The Children's Hospital of Philadelphia, showed fetal surgery for spina bifida improved outcomes for children.

Today, some of the families who received the groundbreaking fetal surgery at CHOP before the MOMS trial began in 2003, talk about spina bifida, fetal surgery and how their children are progressing. 

SeanSean • Age 10
Hometown: Cincinnati, OH
Fetal surgery date: Sept. 29, 2000 (23 weeks gestation)
Interests: Cub Scouts, soccer, basketball, tennis, swimming, baseball (pitcher), piano

Sean has never needed a shunt and his bowel and bladder function are good.

“He’s awesome,” his mom Katherine says. “He runs, he jumps, he plays, he does everything he wants to do. You would not be able to pick him out from a group of kids his age as having spina bifida. What they did for his quality of life and ours is just absolutely incredible.”

Read Sean's expanded story.

GabrielleGabrielle • Age 8
Hometown: Naperville, IL
Fetal surgery date: Feb. 14, 2003 (23 weeks gestation)
Interests: Writing, drawing, rollerblading, jumping rope, biking, swimming, ballet

Gabrielle had surgery at CHOP to detether her spinal cord at age 3. She wears ankle-foot orthotics (AFOs), but can run and jump the same as other girls her age. In school, she gets help in math, but is reading above grade level.

“She’s a typical little girl,” says her mom Maribel. “If you were to look at her, you wouldn’t know she has this disability at all.”

JosephJoseph • Age 9
Hometown: West Chester, PA
Fetal surgery date: Nov. 9, 2001 (21 weeks gestation)
Interests: Watching sports, hanging out with friends, wheelchair basketball, horseback riding, swimming

Before fetal surgery, Joseph suffered severe hydrocephalus and Arnold-Chiari malformation. He has bowel and bladder issues, uses a catheter, and uses crutches, long-leg braces and a wheelchair to get around, but he has not needed a shunt and is doing well in the school. 

“Joseph is a special kid,” says his mom Terri. “He knows what he wants and he does it.”

KatherineKatherine • Age 10
Hometown: Unionville, CT
Fetal surgery date: April 28, 2000 (22 weeks gestation)
Interests: Music, animals, horseback riding, swimming

Katherine has bowel and bladder problems and uses a catheter. She is able to walk independently, and also uses braces and crutches.

“There’s never been anything she couldn’t do,” says her mom Marybeth. “She may do it a little differently, but she does it. We attribute all the success she’s had to the fact that she had the surgery.”

ColinColin • Age 10
Hometown: St. Clair Shores, MI
Fetal surgery date: Feb. 19, 2001 (22 weeks gestation)
Interests: Piano, guitar, baseball (catcher), basketball, biking

Colin had shunt surgery at 5 weeks old and surgery to repair the shunt at age 4. He walks unaided, runs and jumps, and is doing well in school. At spina bifida conferences his family goes to, people often ask his mother where her child with spina bifida is, not realizing that it’s the boy standing right beside her.

“He knows that he’s unique,” his mom Shannon says.

MiaMia Lisa • Age 12
Hometown: Cape May Court House, NJ
Fetal surgery date: March 17, 1999 (23 weeks gestation)
Interests: Dance since age 3

Mia Lisa has full bowel and bladder control and has not experienced hydrocephalus. In 2010, she returned to CHOP for surgery to detether her spinal cord. She is almost back to her full level of activity before the surgery — she recently participated in her seventh dance recital.

“She understands what could have been,” says her mother Giovanna.

Read Mia Lisa's expanded story.

ConnorConnor • Age 8
Hometown: Easton, PA
Fetal surgery date: Feb. 13, 2003 (22 weeks gestation)
Interests: Soccer, dancing, acting, Cub Scouts

Connor has slight paralysis on the bottom of one foot and weakness in the other. He wears ankle-foot orthotics (AFOs) and receives physical therapy, but can run, jump and move around well otherwise. He is doing very well with math, reading and writing in elementary school. 

"Fetal surgery gave us a chance to do something proactive for our child — BEFORE he was born," his dad Frank says.

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