Why Choose Us for CDH Care

Why Choose Us for CDH Care

When a baby is born with congenital diaphragmatic hernia (CDH), they require special care from the very start. Many of these babies suffer life-threatening complications when they’re first born, and may require unique support as they enter childhood.

To make sure your child has the best outcome, it is important to visit a fetal therapy center experienced in evaluating and managing pregnancies affected by CDH and caring for the short- and long-term effects of this condition. From an accurate, detailed diagnosis to personalized treatment planning, families can find everything they need at Children’s Hospital of Philadelphia (CHOP).

Since 1995, the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT) at CHOP established one of the best programs in the world to understand and treat CDH. We care for more babies born with CDH than any hospital in the world and our experience spans all levels of severity. Every patient we care for provides us with an unparalleled approach to care and improved quality of life.

Our Experience with CDH

  • More than 1,938 patients referred to the CFDT
  • 598 babies with CDH delivered in our Special Delivery Unit since July 2008
  • More than 760 patients with CDH repaired postnatally
  • 300 CDH patients on ECMO

All numbers except deliveries reflect data from 1995-January 2024 at Children's Hospital of Philadelphia.

  • Congenital Diaphragmatic Hernia: A World Leader in Research and Care

    Holly L. Hedrick, MD: Imagine finding out when you're pregnant that your child will be born with a life-threatening condition. A birth defect so severe that their abdominal organs move into their chest, threatening growth of the lungs. When they're born, they will struggle to breathe. Over the past three decades, Children's Hospital of Philadelphia has established the largest program in the world to treat that condition, known as congenital diaphragmatic hernia or CDH.

    We see many patients with CDH and what we learn allows us to make breakthroughs. These children may require expert follow-up care for years to manage pulmonary hypoplasia, also known as small lungs, and other health issues. Our Pulmonary Hypoplasia Program, created in 2004, follows children with CDH into adolescence.

    More than 1000 patients from around the world are enrolled. We see it as our responsibility to monitor our patients and optimize their care, and we learn a great deal from following their life course. Our dedicated CDH team has spent nearly three decades translating our findings into advances that have pushed care to new frontiers.

    Advances like pioneering fetal imaging that helps us predict CDH severity, and monitor the condition, prenatally. Advances like building the world's first special delivery unit in a free-standing children's hospital, which gives babies immediate access to an expert neonatal team. Advances like developing highly technical and life-saving interventions for babies who will struggle to breathe during and afterbirth.

    Advances like becoming experts in ECMO, a life-saving form of heart-lung bypass for infants with severe cardio-respiratory failure. And finally, and most importantly, creating a fetal psychosocial team that surrounds families with support services throughout their journey with us. While great strides have been made, there is still so much more work to be done. Inspired by our patients and their families, who we care so much about, and supported by generous donors, we have built the most robust CDH research program in the world. Our researchers continue to study the molecular and genetic factors that cause CDH, and we are on the cusp of revolutionary advances, from a more effective and safer form of ECMO, to a new way of ventilating babies that is less harmful to their lungs.

    Amazing things are on the horizon and as we continue to care for babies with CDH, we will continue to learn and continue to improve the future for children and families.
Transcript Transcript

When it comes to your child, attention to the tiniest details matters, from the moment of prenatal diagnosis through delivery, surgery and follow-up care. Our large multidisciplinary team — including maternal-fetal medicine specialists, neonatologists, advanced practice nurses, fetal therapy nurse coordinators, genetic counselors, fetal imaging specialists, labor and delivery nurses, anesthesiologists, fetal cardiologists, and more — has a level of ongoing collaboration that is unmatched.

We have pioneered advances that have pushed CDH care to new frontiers and improved the life course for children.

The decision to choose CHOP was a no-brainer. The expertise of the medical team and the quality of the facilities were both so much better than what was available near home.
Elizabeth, mom of CDH patient Milana

When you choose to come to our center for management of CDH, you’ll have access to the best possible care at every step:

  • Advanced prenatal imaging – Our fetal imaging specialists use advanced prenatal imaging techniques to make a precise diagnosis, predict CDH severity and monitor the condition before birth.
  • Genetic counseling – Your care team will include dedicated prenatal genetic counselors who provide education, supportive counseling and genetic testing to help you navigate your unique situation and provide as many answers as possible.
  • Prenatal treatment options – For select cases of severe CDH, we offer fetoscopic endoluminal tracheal occlusion (FETO), a fetal surgery procedure that may improve outcomes by allowing the lungs to grow more before birth.
  • Surveillance and planned delivery – Our Garbose Family Special Delivery Unit (SDU) is the world’s first birth facility in a freestanding pediatric hospital designed for mothers carrying babies with known birth defects. More than 50 patients with CDH are born in our SDU every year, the most of any program.
  • Immediate stabilization at birth – After delivery in the SDU, babies are immediately stabilized by a specialized Newborn Stabilization and Resuscitation Team.
  • Level IV neonatal care – Our 100-bed Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU) is ranked among the best in the nation.
  • Bedside surgical repair – Once a baby is strong enough, repair of the hole in the diaphragm occurs at the N/IICU bedside, as it’s safer for the baby not to be transported to another location. Our Neonatal Surgical Team is the first team of its kind in the world.
  • Excellence in ECMO– Babies born with CDH may require extracorporeal membrane oxygenation (ECMO), a heart/lung bypass machine. CHOP’s ECMO Center has been designated a Center of Excellence by the Extracorporeal Life Support Organization since 2008. The center has had more than 1,500 ECMO cases since opening in 1990, nearly 250 being babies with CDH.
  • Comprehensive long-term follow-up – Our commitment to your child continues well after discharge with a dedicated follow-up program. Our Pulmonary Hypoplasia Program (PHP) brings together experienced specialists across many disciplines to monitor and treat health issues children born with CDH often face through early childhood and adolescence, tracking outcomes to improve understanding and care for future generations.
  • Network of supportive psychosocial services – A clinical psychologist, psychiatrist, social workers and child life specialists provide psychosocial support services, including emotional support, individualized and couple's counseling, and supportive therapy for your family every step of the way.

To help you make decisions about your child's care, we encourage you to read these frequently asked questions about CDH, where we answer some of the most common questions families ask.

You can also watch this video following one family's journey with a prenatal CDH diagnosis through treatment at our center to learn more about what to expect and the care you can expect to receive here at CHOP.