Every 4 ½ minutes, a baby is born with a birth defect in the United States, frequently with diagnoses so rare most parents and even some clinicians have never heard of them. Often, families do not realize there may be treatment options, such as those at Children’s Hospital of Philadelphia (CHOP) — with experts with unparalleled experience in treating even the rarest conditions.
This January, the Center for Fetal Diagnosis & Treatment (CFDT) at CHOP is celebrating Birth Defects Awareness Month. To raise awareness, we are sharing patient stories and other helpful information.
“Through advancements and innovations including fetal MRIs, ultrasounds and genetic testing, we are able to diagnose birth defects much earlier than ever before,” said fetal surgery pioneer and pediatric surgeon N. Scott Adzick, MD, Medical Director of the Hospital’s CFDT, and Surgeon-in-Chief. “However, birth defects still remain the leading cause of infant mortality in the United States. It is our mission to change that statistic while continuing to provide expert care to the mother and child facing a diagnosis.”
The CFDT at CHOP is a global leader in 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 top 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 and was awarded an Outstanding Science and Technology Programming Emmy® at the 37th Annual News and Documentary Emmy Awards this past September.
Lesly and her daughter Lilly
“They told me that she wasn’t going to survive,” recalls Lesly, mother of Lilly who was treated in the CFDT. Lesly’s doctor in California offered little hope when an enormous tumor growing outside of the baby’s mouth was spotted on an ultrasound. “They told me that if I kept the baby, I was putting my life at risk. They basically declared her dead in a sense.” After receiving the grim news, Lesly decided to move home to New Jersey and seek care at CHOP. Here, our team quickly put into place a treatment plan, and today Lilly is a happy, healthy 3-year-old. Read Lesly and Lilly’s full story.
This is just one example of the thousands of patients — from all 50 states and over 60 countries — cared for by the CFDT. Each week, highly sophisticated surgical teams repair spina bifida and other birth defects both in and out of 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 5,000 fetal surgeries done worldwide, a quarter of them have been performed at CHOP, more than 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.