This January, the Center for Fetal Diagnosis & Treatment (CFDT) at Children’s Hospital of Philadelphia (CHOP) is celebrating Birth Defects Awareness Month. Every 4 ½ minutes across the United States, a baby is born with a birth defect that many parents and even some clinicians have never heard of. Often, families are unaware of a place like the CFDT at CHOP, where no condition is viewed as too rare, and treatment options exist.
The CFDT at CHOP is a global leader in fetal medicine, and one of only a few programs worldwide to offer comprehensive prenatal diagnosis, fetal surgery, therapy, and the option of delivering at a top pediatric hospital. The CFDT is also home to the Garbose Family Special Delivery Unit (SDU), the world’s first birthing unit within a pediatric hospital dedicated to healthy mothers carrying babies with serious and life-threatening birth defects. The SDU, which is celebrating its 10th anniversary this year, is staffed by a team of dedicated clinicians fully equipped to manage the high level of care required before, during and after delivery.
“In a relatively short period of time, we have made many advancements to diagnose and treat birth defects earlier than before,” said fetal surgery pioneer and pediatric surgeon, N. Scott Adzick, MD, Medical Director of the CFDT and the Hospital's Surgeon-in-Chief. “Because birth defects still have a serious, adverse effect on the health, development and functional ability of a child, and given the fact that they account for more than one in every five infant deaths, we must continue to make important breakthroughs.”
“I didn’t even know how to spell it,” recalls Casey. Casey and Bryan Kirsch’s unborn son, Jackson, was diagnosed with giant omphalocele, a rare birth defect that occurs when the abdominal wall fails to close and the bowel, liver and other organs protrude into the base of the umbilical cord. Determined to give their son every chance to live a healthy life, they temporarily relocated to Philadelphia from Hoboken, N.J., to receive care in the CFDT.
Jackson was born in the SDU and was immediately stabilized by a team of pediatric surgeons, neonatologists, specially trained nurses and respiratory therapists. The CFDT is one of the most experienced fetal treatment centers in the world, with unparalleled expertise caring for babies with complex birth defects, including giant omphalocele. Since the Center opened in 1995, the team has cared for more than 1,000 babies with gastrointestinal abnormalities. Now seven years old, Jackson has boundless energy, including swimming, soccer and jiu-jitsu.
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 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.
Throughout January, the CFDT at CHOP will be highlighting patient stories and sharing important facts about birth defects to help raise awareness. Spreading the word about conditions and treatment options available is vital and necessary. There are many ways to get involved and advocate for children like Jackson. Find helpful resources in the CFDT’s advocacy toolkit.