Interactive patient guidebook about Congenital Diaphragmatic Hernia complete with text, illustrations and multiple videos produced by UCSF Pediatric Surgery. (Free, iPad only)
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.
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.
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.
In 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.
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.
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.
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.
Mother tells the story of her experience of the diagnosis of CDH, care in the ICN, and the LIFE Clinic.
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.