celebrating 25 years of fetal medicine + the lifechanging innovations to come

special editorial submitted by friends steward partner center for fetal diagnosis and treatment at children's hospital of philadelphia

For 25 years, the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia has worked tirelessly to advance the field of fetal medicine and offer lifesaving care for pregnancies diagnosed with birth defects. Here, we highlight past advances and look ahead to advances on the horizon.

Madison is a bright young adult studying to become a doctor. It’s hard to imagine that before she was born, she was diagnosed with a birth defect and given just a 60% chance of survival. She is one of many individuals whose lives were transformed because of the care they received before and after birth at the Center for Fetal Diagnosis and Treatment at Children’s Hospital of Philadelphia (CHOP). This year marks the 25th anniversary of connexions 23

the Center, the largest and most comprehensive program of its kind in the world. Over that time, more than 27,000 expectant families from all 50 states and more than 70 countries have done what Madison’s family did and turned to CHOP’s expert fetal team for hope and help.

Making ‘science fiction’ a reality

“In the beginning, there was a huge amount of skepticism about the idea of treating birth defects while a baby was still in its mother’s womb,” says Center co-founder, fetal surgery pioneer, and CHOP Surgeon-in-Chief, N. Scott Adzick, MD, MMM. “When we spoke about it at medical conferences, few people in the audience took the idea seriously, and some people thought we were crazy. But we weren’t.” Adzick and Center co-founder and Executive Director, Lori J. Howell, DNP, MS, RN, were trailblazers of the field of fetal medicine. Together, through three decades of hard work, dedication and innovation, they and the entire multidisciplinary team have improved the lives of children with birth defects across the world.

Thanks to their efforts, tumors can be removed, defects repaired, and conditions that threaten twins corrected, all while children are still inside their mother’s womb. Doing so can minimize — and in some cases, even prevent — the damage caused by the birth defect. Today, the team has grown exponentially. Under the continued leadership of Adzick and Howell, as well as Julie S. Moldenhauer, MD, the Center’s Director of Obstetrics, CHOP has the most experienced fetal diagnosis and treatment team in the world. The skilled team has trained the next generation of fetal medicine clinicians, including fetal surgeons, maternal-fetal medicine specialists, and fetal experts in radiology, anesthesia, neonatology, pediatric/surgical subspecialties and long-term care, through several elite fellowship programs.

Myriad milestones

Throughout the past 25 years, myriad milestones have been set by CHOP’s fetal team, many of them firsts in medical history. Here is a look back at some of their achievements:

• First-ever fetal surgery at

CHOP • In 1995, when Felicia and Roberto Rodriguez traveled from their home in Florida to CHOP, the newly opened Center was one of only two programs worldwide capable of treating birth defects in utero. Dr. Adzick and his team performed the first-ever fetal surgery at CHOP to treat their son Roberto Jr.'s lung lesion. Roberto was born completely healthy, was a star baseball player growing up, and is now an active young adult making his way in the world. Today, CHOP’s team has performed more than 2,000 fetal surgeries and is the undisputed world leader in fetal surgery.

• Pioneering fetal surgical

techniques • CHOP developed many of the surgical techniques used to treat conditions, including myelomeningocele (MMC), the most severe form of spina bifida, before birth. CHOP also led the Management of Myelomeningocele Study (MOMS), a groundbreaking study published in 2011 that proved that fetal repair of MMC can improve a child’s chances of being able to walk independently and reduce their chances of needing a shunt tube to drain fluid from the brain.

• Advancing prenatal imaging

techniques • CHOP has been at the forefront of prenatal imaging techniques since the Center’s inception, including developing fetal MRI, which along with detailed prenatal ultrasound, is used to provide an extraordinarily accurate picture of the fetus. This allows CHOP’s team to better discuss how an abnormality will affect the pregnancy as well as the child’s future prognosis. Beverly Coleman, MD, Director of Fetal Imaging, oversees a robust team of specialized fetal radiologists and sonographers, all of whom are focused on providing the most accurate prenatal diagnosis for some of the rarest conditions.

• First-ever delivery unit of its

kind • In 2008, CHOP opened the Garbose Family Special Delivery Unit (SDU), the first comprehensive birth facility in a freestanding pediatric hospital designed specifically for healthy mothers carrying babies with birth defects. The SDU has revolutionized the birth experience for families by keeping mother, baby and family in one space for labor, birth and the postpartum experience. More than 4,500 deliveries have taken place in the unit since it opened, and the obstetrical team has grown to include maternal-fetal medicine specialists, obstetricians, nurse midwives, labor and delivery nurses, and others.

• Establishing support services

for families • CHOP was instrumental in establishing the fetal therapy coordinator as a vital component of the fetal care team. The fetal therapy coordinator is the first point of contact for families and guides them through every step of care. The Center’s robust psychosocial support team, which consists of social workers, psychologists, psychiatrists, child life specialists and a chaplain, also helps patients and their families cope with the emotional hardship of a fetal diagnosis. This team leads CHOP’s Perinatal Palliative Care and Bereavement Program, which offers specialized support for families who learn their baby is at high risk of dying either before or shortly after birth.

Providing the best possible experience for families

Each member of CHOP’s team has dedicated their entire career to advancing the field of fetal medicine — and improving outcomes for children. From the anesthesiologists who ensure the safety and comfort of two patients simultaneously during groundbreaking fetal procedures, to the cardiologists in the Fetal Heart Program (FHP) who diagnose heart problems as early as 12 weeks’ gestation; from the specialists on the Neonatal Surgical Team who care for challenging and complex surgical neonates, to the multidisciplinary Pulmonary Hypoplasia Program team, one of the few in the world to provide long-term multidisciplinary care to children with conditions that limit lung growth.

Their combined commitment to providing families the best possible experience recently earned special recognition by Press Ganey, a company that measures patient satisfaction.

Advances on the horizon

As the largest fetal care center in the world and a pioneer in fetal research, CHOP’s Center for Fetal Diagnosis and Treatment has advanced the field in unbelievable ways. Since 1995, the Center for Fetal Research has pushed the boundaries of what is possible in an effort to offer hope to more children affected by congenital conditions. Now on the horizon are innovations that promise to transform the next 25 years of fetal care. The research team is leading cutting-edge discoveries in gene therapy, gene editing, tissue engineering, minimally invasive treatment approaches, and the creation of a womb-like device to support extremely premature infants. Researchers in the Center for Fetal Research are also working to address complex conditions like congenital diaphragmatic hernia with novel prenatal and postnatal therapies and delineate new pathways that may be helpful in treatment. The cause of most birth defects is still unknown because large studies have been lacking. The Center for Fetal Diagnosis and Treatment is a unique resource that offers the opportunity to enroll a large population of mothers carrying a fetus with a birth defect. The Birth Defects Biorepository (BDB) — launched in 2019 — is a coordinated effort that harnesses the expertise of the Center’s genetic counselors to gather and analyze genetic information from mother, father and baby to unravel the mysteries of birth defects.

“Better understanding of the interrelation of mother and baby can improve the outcome for both,” says Moldenhauer, who notes that the BDB will be instrumental in improving prenatal management and outcomes after fetal surgery, and determining how fetal conditions and their treatment place mothers at increased risk for complications. The Center for Birth Defects Outcomes (CBDO) is another initiative that supports reporting real-time clinical outcomes for patients with an innovative software platform. This information is critical to guide family counseling, adapt and improve care for future patients and their families, and support decision-making for patients, their physicians and insurance companies deciding among competing care options. The CBDO complements CHOP’s already robust fetal clinical research team, building on decades of birth defects research.

Center for Fetal Diagnosis + Treatment at Children’s Hospital of Philadelphia

An internationally recognized leader in fetal diagnosis, fetal surgery and fetal care.

Support for mom and baby, every step of the way.

800-468-8376 fetalsurgery.chop.edu