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Congenital Diaphragmatic Hernia

CDH Guidebook for iPad

CDH guidebook

Interactive patient guidebook about Congenital Diaphragmatic Hernia complete with text, illustrations and multiple videos produced by UCSF Pediatric Surgery. (Free, iPad only)

Download via iTunes

Our long experience with prenatal diagnosis and planning for optimum care allows us to offer the highest quality treatment whether intervention is indicated before or after birth.

Under the direction of Dr. Michael Harrison, the Fetal Treatment Center was the first institution to develop fetal surgery techniques for CDH. The first open fetal surgery in the world was performed at UCSF since the early 1980's. We presently have more experience with fetal surgery and endoscopic fetal intervention (FETENDO fetal surgery) than any other institution in the world. We are dedicated to congenital diaphragmatic hernia research and treatment innovation.

What is Congenital Diaphragmatic Hernia?

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The wide, flat muscle that separates the chest and abdominal cavities is called the diaphragm. The diaphragm forms when a fetus is at 8 weeks’ gestation. When it does not form completely, a defect, called a congenital diaphragmatic hernia (CDH), is created. This is a hole in the muscle between the chest and the abdomen.

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What is the outcome for a fetus with CDH?

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There is a wide range of severity and outcomes for CDH. In the best cases, some infants do very well with routine treatment after birth. In the worst cases, some will not survive no matter how hard we try. And in the middle, some will live normally while others will have a difficult time and have to deal with some handicaps ranging from mild learning problems to breathing and growth problems. How the baby does after birth is determined by how well the lung grows before birth.

Learn more about the outcomes for a fetus with CDH

How serious is my fetus’s diaphragmatic hernia?

watch videoIn order to determine the severity of your fetus's condition it is important to gather information from a variety of tests and determine if there are any additional problems. These tests along with expert guidance are important for you to make the best decision about the proper treatment.

This includes:

  1. The type of defect—distinguishing it from other similar appearing problems.
  2. The severity of the defect—is your fetus’s defect mild or severe.
  3. Associated defects—is there another problem or a cluster of problems (syndrome).

Learn more about the severity of CDH

What are my choices during this pregnancy?

For those families who choose to continue the pregnancy the most important next step is the accurate prenatal diagnosis about the severity of the condition which determines the choices available for prenatal management. If your fetus is on the better end of the spectrum, the most important choice is where to deliver the baby. The timing and type of delivery will not greatly affect outcome, but the place of delivery certainly will. These families will want to work out a plan for delivery and postnatal care with their obstetrician/perinatologist, the neonatologist, and pediatric surgeons so the baby can be stabilized and treated in the same center.

Minimally Invasive Surgery: Tracheal Occlusion

watch videoFetuses on the most severe end of the spectrum with liver up and LHR less than 1.0 may be candidates for prenatal intervention.

The FTC at UCSF has long been the world leader in treatment for CDH. We now have received an investigational device exemption to use a device new to North America for tracheal occlusion in severe CDH. We have the only significant experience with tracheal occlusion in the United States. We now offer tracheal occlusion to a select group of patients that we feel have the most to potentially benefit from this procedure. This surgery uses only a tiny keyhole incision in the mother and mother's uterus so that mothers can deliver vaginally without need for an EXIT procedure in most cases.

Learn more about my options

Learn more about minimally invasive tracheal occlusion

What will happen after birth?

watch video All babies with CDH should be delivered at a tertiary perinatal center with a high-level intensive care nursery and pediatric surgery. It is not possible to tell before birth how much support any baby will need after birth. Babies with CDH known before birth should never be delivered in an institution incapable of providing all the support needed: transporting a sick baby can be dangerous.

Learn more about what will happen after birth

Last Updated: 5/23/2012

The Mitchell Family

Mother tells the story of her experience of the diagnosis of CDH, care in the ICN, and the LIFE Clinic.

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Analisa Amen

Analisa Amen

When Kristen Amen and Tony Garcia learned that their baby would be born with a condition called congenital diaphragmatic hernia (CDH), at first the news was devastating.

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Sam Sieber and sister
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