CHOP Marks 2016 Birth Defects Awareness Month

1 in Every 33 Babies is Born with a Birth Defect

Published on in CHOP News

Each year, nearly 150,000 babies are born in the United States with birth defects, many with conditions so rare most parents and even some clinicians have never heard of them. Too often, these families aren’t made aware of the treatments available at a place like The Children's Hospital of Philadelphia (CHOP) and they are left feeling overwhelmed, with few options.

This month, the Center for Fetal Diagnosis and Treatment at CHOP is celebrating Birth Defects Awareness Month by sharing information and patient stories to raise awareness.

“Although birth defects remain the leading cause of infant mortality in the United States, we have been able to develop and share innovations that have helped advance treatment,” said fetal surgery pioneer and pediatric surgeon N. Scott Adzick, MD, medical director of the Center for Fetal Diagnosis and Treatment at CHOP, where he is also Surgeon-in-Chief.

The Center for Fetal Diagnosis and Treatment at CHOP is a pioneer in the field of fetal medicine, and is one of only a few programs worldwide to offer comprehensive prenatal diagnosis, fetal surgery and therapy, and the option of delivering at a leading pediatric hospital. The Center was also the focus of a three-part documentary series called “Twice Born: Stories from the Special Delivery Unit,” that aired on PBS in 2015.

Each week at CHOP, highly sophisticated surgical teams repair spina bifida and other birth defects in the womb, place fetal shunts to treat life-threatening congenital conditions, or perform minimally invasive procedures in the mother’s uterus to treat complications in fetal twins. Of approximately 4,000 fetal surgeries done worldwide, a quarter of them have been performed at CHOP, more than at any other hospital. The Center staff has also managed thousands of pregnancies complicated by birth defects in which newborns need immediate specialized medical care or surgery after delivery. Learn more about fetal surgery in this infographic.

To help us celebrate and spread the word, some of our patient families have shared the story of their experiences at our Center. We hope their stories will be a source of hope and invaluable information for other families.

Meet some of our fetal surgery patients

Patient MaeveMeet Maeve: After having twins, Kelly and Dan of Cleveland, Ohio, were hoping their second pregnancy would be a little more low-key. But at their 20-week ultrasound, the couple learned that their unborn daughter, Maeve, had a sacrococcygeal teratoma (SCT), a tumor located at the base of her tailbone. Before she was born, doctors at CHOP performed fetal surgery to remove the huge tumor.

Read Maeve’s story »

Patient OwenMeet Owen: Tara and Travis first learned something was wrong with their unborn baby boy when they went in for a routine screening with a maternal-fetal medicine specialist. The baby’s bladder was enlarged to the size of his head, indicating an obstruction. The doctor wasn’t optimistic, but they weren’t ready to give up. At 19 weeks, Tara underwent a fetal shunt procedure to bypass the lower urinary tract obstruction (LUTO) and allow urine to drain from the baby’s bladder into the amniotic fluid. At 37 weeks, Owen was born.

Watch Owen’s story »

Patient AddisonMeet Addison: Mary was 26 weeks pregnant with her daughter Addison when she and her husband Jed learned that their baby was very sick. Addison had a large mediastinal teratoma, a tumor in the middle of her chest between her heart and lungs that was causing her to go into heart failure. They turned to CHOP to find out what their options were, and opted for fetal surgery. A large, multidisciplinary team successfully removed Addison’s tumor while she was still in the womb.

Watch Addison’s story »

Patients Stella and OliviaMeet Stella and Olivia: Five-year-old identical twins Stella and Olivia are full of giggles. They delight in the fact that people have a hard time telling them apart. But before the girls were born, there was a very significant difference that meant a life or death situation for one or both of the twins: twin-twin transfusion syndrome (TTTS). While still in their mother’s womb, the girls underwent fetoscopic selective laser ablation, a procedure in which the Center’s skilled surgeons used a special laser to disconnect the shared blood vessels between the twins with the hope of halting the progression of TTTS.

Watch their story »

Patient SeanMeet Sean: In early September 2000, 21 weeks into their first pregnancy, Mike and Katherine Mulligan of Cincinnati, OH, went for their first ultrasound. They were both excited, expecting to hear only good news. Instead, they learned that their unborn baby was diagnosed with myelomeningocele (MMC), the most severe form of spina bifida, a condition in which part of the spinal column doesn’t close around the spinal cord, exposing it to damage during fetal development. Sean underwent a complex fetal surgery, where surgeons repaired the opening in her spine before birth.

Read Sean’s story »

“It is truly inspiring to see so many children, who as babies likely could have died, growing up healthy and strong,” said Adzick, “and as the field of fetal surgery and therapy continues to advance, we look forward to treating more and more babies.”