Congenital Diaphragmatic Hernia (CDH)

Diaphragmatic hernia (Congenital diaphragmatic hernia [CDH])

A defective development of the diaphragm occurring in about 1 of 2,300 births. A diaphragmatic hernia occurs when the embryonic components of the diaphragm do not fuse normally. Normally the diaphragm forms a solid layer of muscle that assists with breathing and keeps the abdominal contents from sliding up into the chest cavity. Failure of the diaphragm to fuse results in an open communication, or hole, between the abdomen and chest cavity.

As a result, the intestines and other abdominal organs pass into the chest compressing the lungs and heart. When infants with congenital diaphragmatic hernia (CDH) are born they have difficulty breathing on their own since their lungs and heart are underdeveloped from the pressure of the intestines and other abdominal contents being up in the chest cavity during fetal life. These problems can be quite serious, even life-threatening.

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A few babies may have only a little problem breathing after birth and recover quickly. Most babies will be sick but can be treated with medicines, a ventilator, and if very sick, extra-corporeal membrane oxygenation (ECMO). ECMO is a heart-lung bypass machine.

Surgically repairing the hernia does not usually improve the baby's breathing right away; it may temporarily worsen breathing problems. The doctor will determine the best time for surgery based on the baby's overall condition. It may take a week or more for the baby's condition to stabilize. When they are stable, surgeons perform an operation to return the abdominal contents to the belly and close the hole in the diaphragm.

This problem can be identified on ultrasound before birth. Each baby with this disease is different and many factors affect survival. It is very difficult to predict from ultrasounds and other tests done during pregnancy how well your baby's lungs will work. Interpreting information you find while researching this problem can be difficult as well. It is best to discuss your research and the specifics of your case with a physician who regularly cares for babies with CDH.

Also see Children's CDH Services

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Children's has a national reputation for providing the most advanced care available for babies with congenital diaphragmatic hernias. Our multidisciplinary team of physicians, registered nurses, nurse practitioners, respiratory therapists, dietitians, chaplains, and social workers has cared for more than 275 CDH patients. Our survival rates meet and in some cases exceed national statistics.

CDH services are provided at Children's - Minneapolis and include:

  • Gentle ventilation strategies, including high-frequency ventilation. Neonatal critical care uses gentle ventilation strategies, including high-frequency ventilation, to protect fragile underdeveloped lungs.
  • Surgical delays where possible and appropriate. A delay in corrective surgery may be possible to allow sick newborns to recover from the stress of delivery before facing the stress of surgery.
  • Pediatric surgical expertise in repairing CDH.
  • Inhaled nitric oxide. Recent studies indicate that babies who are on ventilators and are receiving nitric oxide may have a smaller risk of serious breathing and other health complications.
  • ECMO (Extra-Corporeal Membrane Oxygenation), a heart-lung bypass procedure to support the most profoundly ill children.
  • Neurodevelopmental services including a follow-up clinic, discharge planners and, if necessary, home care services.
  • On-site lactation consultants.
  • Child life specialists to help siblings understand and cope with the CDH diagnosis. Child life specialists staff the sibling play area, which provides siblings with a place to play during hospital visits.
  • Family Resource Center, including a library, wireless Internet access and assistance with building a CaringBridge™ Web site to help stay connected with family and friends while in the hospital.

What to expect at Children's

Prenatal counseling

Children's offers prenatal counseling for families anticipating the birth of a baby with CDH. Based on scientific data and knowledge gained from your prenatal evaluations, a neonatologist will discuss your baby's anticipated medical needs with you. Accurate and detailed counseling is provided to enable you to make informed decisions about your child's care. You will tour the neonatal intensive care unit (NICU) and receive educational materials about the care of babies with CDH as well as information about ECMO (Extra-Corporeal Membrane Oxygenation). Experienced perinatologists will care for you during the remainder of your pregnancy.

Your baby's birth

Parents who wish to give their baby access to the full range of Children's CDH services give birth in Minneapolis at Abbott-Northwestern Hospital, which is connected to Children's – Minneapolis. Babies with CDH often are very ill from the moment their umbilical cord is clamped and they become dependent on their own lungs and pulmonary blood vessels. A Children's neonatal physician and neonatal transport team, who are experienced in the immediate resuscitation and stabilization of critically ill babies, attend all CDH births at Abbott-Northwestern.

Post-delivery care for your baby

From the delivery room, your child will be taken to Children's neonatal intensive care unit (NICU) to receive 24-hour care from an in-house neonatal physician and our multidisciplinary team. Pediatric surgeons, with a combined experience of more than 125 years, also will care for your child. Together with the neonatologist they will determine the timing of surgery to repair the diaphragmatic defect.

Making care decisions for your family

Parents of a child with a CDH diagnosis may be faced with difficult decisions at many points in time—before, during, and after delivery. Unfortunately, there is no proven and universally accepted method of determining the amount of support your baby will require after birth. Interpreting information you find while researching this problem can be difficult as well. It is best to discuss your research and the specifics of your case with a physician who regularly treats babies with CDH.

Children’s Hospitals and Clinics of Minnesota has a national reputation for providing the most advanced care available for babies with congenital diaphragmatic hernias. (CDH) Our multidisciplinary team of physicians, registered nurses, nurse practitioners, respiratory therapists, dietitians, chaplains, and social workers have cared for more than 275 CDH patients. Our survival rates meet or, in some cases, exceed national statistics.

CDH children have a hole in their diaphragm allowing the intestines and other abdominal organ to enter the chest and compress the lungs and heart. (More on CDH)

Parents of a child with a CDH diagnosis may be faced with difficult decisions at many points in time--before, during, and after delivery. Unfortunately, there is no proven and universally accepted method of determining the amount of support your baby will require after birth. Interpreting information you find while researching this problem can be difficult as well. It is best to discuss your research and the specifics of your case with a physician who regularly treats babies with CDH.

Children’s offers prenatal counseling for families anticipating the birth of a baby with CDH. Based on scientific data and knowledge gained from your prenatal evaluations, a neonatologist will discuss your baby’s anticipated medical needs with you. Accurate and detailed counseling is provided to enable you to make informed decisions about your child’s care. You will tour the Neonatal Intensive Care Unit and get educational materials about the care of babies with CDH as well as information about ECMO (Extra-Corporeal Membrane Oxygenation).

Successful treatment of babies with CDH requires a complete understanding of the problems in the lungs, pulmonary blood vessels, and sometimes the heart. Nationally, it is recognized that babies with CDH are best delivered at centers that offer a standardized approach to care, personnel with extensive experience, and the technologies most often used in the treatment of CDH.

Children’s Hospitals and Clinics offers state of the art care, including:

  • Neonatal critical care using gentle ventilation strategies to protect fragile underdeveloped lungs, including high-frequency ventilation
  • A delay in corrective surgery until sick newborns recover from the initial stress of birth before facing the stress of surgery
  • Pediatric surgical expertise in repairing CDH
  • Inhaled nitric oxide
  • ECMO (Extra-Corporeal Membrane Oxygenation), a heart-lung bypass procedure to support the most profoundly ill children.

Babies with CDH often are very ill from the moment their umbilical cord is clamped and they become dependent on their own lungs and pulmonary blood vessels. A neonatal physician and neonatal transport team experienced in the immediate resuscitation and stabilization of critically ill babies attend all CDH births. From the delivery room, your child will be taken to the Neonatal Intensive Care Unit to be cared for by an in-house neonatal physician and our multidisciplinary team 24 hours per day. Pediatric surgeons, with a combined experience of more than 125 years, will also care for your child. Together with the neonatologist they will determine the timing of surgery to repair the diaphragmatic defect.

A wide range of additional services and medical specialists are available at Children’s to meet all the needs of your family. Experienced perinatologists will care for you during the remainder of your pregnancy. Others include on-site lactation consultants, child life services, a sibling play area, the family resource center, Caring bridge—a way to stay connected with family and friends via the Internet, neurodevelopmental services including a follow up clinic, discharge planners and, if necessary, home care services.

More on congenital diaphragmatic hernia

CDH: Care At Home

Children’s has a national reputation for providing the most advanced care available for babies with co

ngenital diaphragmatic hernias. Our multidisciplinary team of physicians, registered nurses, nurse practitioners, respiratory therapists, dietitians, chaplains, and social workers has cared for more than 275 CDH patients. Our survival rates meet and in some cases exceed national statistics.

CDH services are provided at Children’s - Minneapolis and include:

  • Gentle ventilation strategies, including high-frequency ventilation. Neonatal critical care uses gentle ventilation strategies, including high-frequency ventilation, to protect fragile underdeveloped lungs.
  • Surgical delays where possible and appropriate. A delay in corrective surgery may be possible to allow sick newborns to recover from the stress of delivery before facing the stress of surgery.
  • Pediatric surgical expertise in repairing CDH.
  • Inhaled nitric oxide. Recent studies indicate that babies who are on ventilators and are receiving nitric oxide may have a smaller risk of serious breathing and other health complications.
  • ECMO (Extra-Corporeal Membrane Oxygenation), a heart-lung bypass procedure to support the most profoundly ill children.
  • Neurodevelopmental services including a follow-up clinic, discharge planners and, if necessary, home care services.
  • On-site lactation consultants.
  • Child life specialists to help siblings understand and cope with the CDH diagnosis. Child life specialists staff the sibling play area, which provides siblings with a place to play during hospital visits.
  • Family Resource Center, including a library, wireless Internet access and assistance with building a CaringBridge™ Web site to help stay connected with family and friends while in the hospital.

What to expect at Children’s

Prenatal counseling
Children’s offers prenatal counseling for families anticipating the birth of a baby with CDH. Based on scientific data and knowledge gained from your prenatal evaluations, a neonatologist will discuss your baby’s anticipated medical needs with you. Accurate and detailed counseling is provided to enable you to make informed decisions about your child’s care. You will tour the neonatal intensive care unit (NICU) and receive educational materials about the care of babies with CDH as well as information about ECMO (Extra-Corporeal Membrane Oxygenation). Experienced perinatologists will care for you during the remainder of your pregnancy.

Your baby’s birth
Parents who wish to give their baby access to the full range of Children’s CDH services give birth in Minneapolis at Abbott-Northwestern Hospital, which is connected to Children’s – Minneapolis. Babies with CDH often are very ill from the moment their umbilical cord is clamped and they become dependent on their own lungs and pulmonary blood vessels. A Children’s neonatal physician and neonatal transport team, who are experienced in the immediate resuscitation and stabilization of critically ill babies, attend all CDH births at Abbott-Northwestern.

Post-delivery care for your baby
From the delivery room, your child will be taken to Children’s neonatal intensive care unit (NICU) to receive 24-hour care from an in-house neonatal physician and our multidisciplinary team. Pediatric surgeons, with a combined experience of more than 125 years, also will care for your child. Together with the neonatologist they will determine the timing of surgery to repair the diaphragmatic defect.

Making care decisions for your family

Parents of a child with a CDH diagnosis may be faced with difficult decisions at many points in time—before, during, and after delivery. Unfortunately, there is no proven and universally accepted method of determining the amount of support your baby will require after birth. Interpreting information you find while researching this problem can be difficult as well. It is best to discuss your research and the specifics of your case with a physician who regularly treats babies with CDH.