Pediatrics

Genetics

Congenital Diaphragmatic Hernia

Congenital diaphragmatic hernia (CDH) is a serious birth defect in which a hole in the diaphragm causes the abdominal organs to move into the chest, interfering with lung development. NewYork-Presbyterian’s congenital diaphragmatic hernia program, offered at NewYork-Presbyterian Morgan Stanley Children’s Hospital and NewYork-Presbyterian Komansky Children’s Hospital, brings together multidisciplinary teams of experts to provide the highest level of care for children who are born with CDH, and support for families coping with this diagnosis. With access to NewYork-Presbyterian’s vast expertise and resources, we customize a plan of care to maximize the best possible outcomes for you and your baby.

What is Congenital Diaphragmatic Hernia?

Congenital diaphragmatic hernia (CDH) is a birth defect that occurs when the diaphragm — the thin muscle separating the chest and abdomen — does not fully form. As a result, there is an opening in the diaphragm. Organs that are normally in the abdomen, such as the intestines, stomach, liver, spleen, and colon, move into the chest through this opening. This causes the lungs to be small and underdeveloped, making it difficult for a baby to breathe. The heart might also not develop normally. After birth, these babies need support to breathe. When they are strong enough, usually within several days, the hernia is repaired with an operation.

CDH can be associated with other birth defects, often other heart conditions. Up to 20 percent of congenital diaphragmatic hernia cases are linked to a chromosome defect or genetic syndrome.

Symptoms

The symptoms of a congenital diaphragmatic hernia include:

Abnormal chest development, with one side larger than the other
Caved-in abdomen
Vomiting
Cyanosis (blue color of the skin due to low oxygen levels)
Difficulty breathing and/or fast breathing
Fast heart rate

Ongoing Conditions

Children born with CDH are at risk for ongoing conditions associated with the birth defect. Our multidisciplinary team of specialists keeps a close watch on your child to optimize their long-term outcomes:

Diaphragm health: A surgeon regularly checks the health of your child’s diaphragm and chest and abdominal wall.
Lung health: A pulmonologist regularly checks your child's lung health and function.
Heart health: A pediatric cardiologist monitors your child’s heart health.
Gastrointestinal (GI) health: A pediatric gastroenterologist closely monitors your child's GI system.

About Our Program

NewYork-Presbyterian’s CDH programs, located at NewYork-Presbyterian Morgan Stanley Children’s Hospital and NewYork-Presbyterian Komansky Children’s Hospital, offers comprehensive, multidisciplinary care for children born with CDH.

Prenatal Care

If your fetus is found to have CDH, we'll begin planning their care before birth through our fetal care centers – the Carmen and John Thain Center for Prenatal Pediatrics at NewYork-Presbyterian Morgan Stanley Children’s Hospital and the Fetal Care Center at NewYork-Presbyterian Komansky Children’s Hospital. Our multidisciplinary team of maternal-fetal medicine (high-risk pregnancy), pediatric surgery, genetic and other sub-specialists collaborate to provide the most comprehensive and compassionate care for children diagnosed with congenital conditions before birth. Our team cares for both you and your baby and provides you with the information you need to make informed decisions.

Newborn Care

If you have a child born with CDH, we can coordinate all of the facets of their care. Our children’s hospitals are internationally renowned for the care of the most complex medical problems in the youngest children. Our CDH programs bring together a multidisciplinary team of pediatric surgeons, neonatologists, cardiologists, pulmonologists, gastroenterologists, orthopedists, developmental pediatricians, and psychologists to follow and manage your child's care throughout infancy and childhood.

Ongoing Care

As your child grows, experts from a range of specialties collaborate to provide ongoing care for children who have conditions associated with CDH. Because we are part of a world-class medical center, we can centralize care for our patients and connect our patients to providers in more than 100 specialties and subspecialties. When the time comes, we can provide the support patients and their families need to ensure a smooth transition from pediatric to adult care.

How We Diagnose Congenital Diaphragmatic Hernia

A prenatal ultrasound performed during pregnancy often indicates this condition in the fetus. After birth, a CDH is diagnosed with a chest X-ray.

Our Approach to Care

Early Intervention to Maximize Outcomes

If your baby is diagnosed prenatally with CDH through an ultrasound or other tests, you will receive care at either the Carmen and John Thain Center for Prenatal Pediatrics at NewYork-Presbyterian Morgan Stanley Children’s Hospital or the Fetal Care Center at NewYork-Presbyterian Komansky Children’s Hospital. These centers are dedicated to the care of mothers and babies with high-risk conditions. Your baby's birth will take place at either NewYork-Presbyterian Morgan Stanley Children's Hospital or NewYork-Presbyterian Komansky Children’s Hospital, where physicians are world-renowned for their expertise with the most high-risk births and complicated newborn conditions.

Holistic and Comprehensive Care

We recognize that every child with a congenital disorder such as CDH has a unique set of symptoms, circumstances, and needs. We take a holistic approach to care that considers the entire patient, including his or her physical, emotional, and social factors. We strive to partner with patients and their parents in shared decision-making, empowering them with knowledge, support, and the most effective treatment options to achieve the best possible outcome for every child.

Multidisciplinary Team Approach to Care

CDH is a complicated condition that requires multidisciplinary care. Our CDH programs bring together the expertise of pediatric specialists including pediatric surgeons, neonatologists, cardiologists, pulmonologists, gastroenterologists, orthopedists, developmental pediatricians, and psychologists. We work closely with your child and family to ensure the best possible treatment and care as your child grows.

Continuity of Care throughout the Lifespan of the Child

Doctor using a stethoscope on a child patient Children who have a lifelong need for specialized care, such as those born with CDH, are embraced by our care teams. We understand the continuous needs of patients regardless of age and are vested in making certain that the transition from childhood to adulthood is simplified by not needing to change care teams. Our integrated care team seamlessly transitions patients born with CDH from infancy through the teen years and early adulthood. When the time comes, we help our patients transition to NewYork-Presbyterian adult care practitioners.

How We Treat Congenital Diaphragmatic Hernia

Newborn Care

Most babies with CDH are placed on a mechanical ventilator at birth. Some, with severe respiratory problems, need to be placed on temporary heart/lung bypass (called ECMO, or extracorporeal membrane life support).

Infant Care

Once the baby is stable, surgery is performed to repair the diaphragm and to move the stomach, intestines, and other abdominal organs back into the abdomen. At NewYork-Presbyterian, our pediatric surgeons offer an abdominal approach as well as a minimally invasive thoracoscopic approach for repair when appropriate. Some infants require additional surgeries to help with any problems that might arise.

Childhood Care and Long-Term Monitoring

All children with CDH require long-term monitoring throughout childhood and beyond to ensure proper development after the hernia has been closed. Through regular follow up appointments, we will monitor your child's growth, lung development, heart, nutritional status, and general health, along with the overall well-being of your child as they grow.

Why Choose Us

Nationally Ranked Children’s Hospitals

NewYork-Presbyterian Morgan Stanley Children's Hospital and NewYork-Presbyterian Komansky Children's Hospital are among the nation's leading centers for the diagnosis and treatment of childhood diseases. They are major referral centers for complex and rare digestive disorders in infants, children, and adolescents.

Expertise in Maternal-Fetal Medicine

The maternal-fetal medicine programs at the Carmen and John Thain Center for Prenatal Pediatrics at NewYork-Presbyterian Morgan Stanley Children’s Hospital and the Fetal Care Center at NewYork-Presbyterian Komansky Children’s Hospital are among the largest and most experienced programs in the country. Headed by leaders from NewYork-Presbyterian/Columbia University Irving Medical Center and NewYork-Presbyterian/Weill Cornell Medical Center with advanced knowledge in pregnancy complications, these experts collaborate with their colleagues in neonatology, pediatrics, cardiology, anesthesiology, and surgery to provide care tailored to your individualized needs.

Exceptional, Comprehensive Care, All in One Location

Babies with CDH often require special care at birth. Our pediatric experts work closely with experts in maternal-fetal medicine to create a detailed plan of care tailored to the unique needs of you and your baby. With the right plan in place, your team of providers will be prepared for your baby’s birth, even if it is complex. At NewYork-Presbyterian, whether you choose to have your baby at NewYork-Presbyterian Morgan Stanley Children’s Hospital or NewYork-Presbyterian Alexandra Cohen Hospital for Women and Newborns, you and your baby will receive exceptional, comprehensive care in the same place. We pride ourselves on having one of the best neonatal intensive care units (NICUs) in the U.S., dedicated to the care of newborns with complex issues.

Level IV Neonatal Intensive Care Units (NICUs)

NewYork-Presbyterian’s neonatal intensive care units (NICUs) are among the most experienced and highly regarded units in the country. Our state-of-the-art Level IV NICUs — the highest level of neonatal care available — care for more than 1,500 critically ill infants each year, including low birth weight babies, premature babies, infants with respiratory distress, gastrointestinal disorders, congenital abnormalities, and other conditions that may require surgery. Our highly trained neonatologists, surgeons nurses, and nurse practitioners use the latest technology and therapies available to offer critically ill newborns the best chance for survival and quality of life.

National Award-Winning Extracorporeal Membrane Oxygenation (ECMO) Programs

Newborns with CDH have underdeveloped lungs and need immediate breathing support with a ventilator. NewYork-Presbyterian offers extracorporeal membrane oxygenation (ECMO), a mechanical life support system that completely takes over your baby’s breathing. ECMO is a life-saving support for some infants with CDH who need surgery before they can breathe independently.

NewYork-Presbyterian/Columbia University Irving Medical Center has been repeatedly designated a Platinum Level Award of Excellence in Life Support by the Extracorporeal Life Support Organization (ELSO) since the first year the Platinum designation was awarded.

NewYork-Presbyterian/Weill Cornell Medical Center has achieved a Gold Level Award of Excellence in Life Support by ELSO.

Access to World-Class Pediatric Specialists

Your child's healthcare team has access to all of the various pediatric medical and surgical subspecialists who practice at NewYork-Presbyterian, ensuring that all of your child's medical needs can be addressed.

Recognized for High Standards of Care

NewYork-Presbyterian is designated a Regional Perinatal Center by the State of New York — the highest hospital classification level — denoting its expertise, treatment, and skills to care for the most difficult and high-risk cases.
NewYork-Presbyterian is a participating Network Center of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Maternal-Fetal Medicine Units Network, supporting research to reduce morbidities associated with preterm birth, fetal growth abnormalities, and maternal complications
National Recognition for Excellence in Nursing from ANCC Magnet Recognition Program