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Congenital Diaphragmatic Hernia (CDH)

What is congenital diaphragmatic hernia?

The diaphragm is a thin muscle that separates the chest from the belly (abdomen) and helps with breathing. A congenital diaphragmatic hernia (CDH) occurs when the diaphragm does not form completely and there is a hole in it. There are two common types of CDH — one with the hole towards the side of the chest (Bochdalek) and one with the hole in front (Morgagni). The Bochdalek hernia causes the more severe problems and is the type discussed here.

Organs that should be in the abdomen can slip through the hole into the chest. Then these organs take up space that should be available for a baby's lungs to grow. So babies born with CDH have smaller lungs than normal. Some of these babies also have trouble with high blood pressure in their lungs. This can keep blood from getting to the lungs easily to pick up oxygen.

The intestines are the organs that most often slip through the hole in the diaphragm. The stomach, liver, spleen, and, once in a while, the kidneys can slip through, too.

The seriousness of CDH depends on how much the lungs' growth has been limited by the lack of space in the chest and how severe the high blood pressure is in the lungs. Most babies with CDH survive with specialized care, but some do not.

Some children have no long-term problems from CDH once they have surgery to fix it. Some children do have ongoing health issues, such as frequent colds, asthma, gastroesophageal reflux, feeding problems and scoliosis (curvature to the spine). In the worst cases, children with CDH have ongoing problems with high blood pressure in their lungs and problems with their lungs getting oxygen to their blood.

Some babies with CDH have other health problems at birth, such as a small heart or a hole in the heart (ventricular septal defect). These problems may also require treatment and will be evaluated by your doctor.

Who gets CDH?

CDH is a congenital condition. The word "congenital" means present at birth. Children with CDH are born with this condition. It occurs early in pregnancy while the diaphragm is forming. Doctors do not know the exact cause. It occurs in about 1 in every 4,000 babies.

What are the symptoms?

Babies with CDH usually have trouble breathing because their lungs are smaller than normal and may be moved to one side by organs from the abdomen.

How do you diagnose CDH?

In some cases, doctors can see and diagnose CDH before birth when a mother gets a routine ultrasound. If this happens with your baby, then your doctors can work with you before your baby is born to plan the treatment that will be needed after birth.

In other cases, there's no sign of CDH before birth. Doctors diagnose the condition after noticing that a newborn has trouble breathing. To find out the reason for this trouble, the baby has a chest X-ray. This can show that organs from the abdomen are in the chest. The lungs may look smaller than normal or may be pushed to one side. In some cases, children need another imaging test called a CT scan (short for "computed tomography scan" and sometimes said "cat scan") to find out more.

What is your experience with CDH at Children's?

We have treated many babies with CDH at Children's. In a typical year, we see about 15 to 20 babies with this condition. Our surgeons are experienced at performing the operation that your child needs to repair CDH. We are also experienced in providing the specialized care your child will need in our neonatal intensive care unit (NICU). The surgery team works closely with our neonatologists (doctors trained to care for new babies with complex problems) and pulmonary (lung) doctors to provide the best plan of care for your child.

When you come to Children's, you have a team of people to care for your child before, during and after surgery. Along with your child's surgeon, you are connected with neonatologists, pulmonologists (lung doctors), nurses, child life specialists, social workers and others. We work together to meet all of your child's health needs and help your family through this experience.

Since 1907, Children's has been treating children only. Our team members are trained in their fields and also in meeting the unique needs of children. For example, the doctors who give your child anesthesia are board certified in pediatric anesthesiology. This means they have extra years of training in how to take care of kids. Our child life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age. Our expertise in pediatrics truly makes a difference for our patients and families.

How do you treat CDH?

Your child will need surgery to gently move his or her abdominal organs down from the chest and close the hole in the diaphragm. Once this is done, your child's lung size should slowly increase over time. Your baby may have the surgery very soon after birth, or doctors may wait days or weeks to do the operation. The timing often depends on the baby's condition and the degree of high blood pressure in the lungs. The doctors can determine the severity of the high blood pressure in the lungs using echocardiography (taking an ultrasound image of the heart).

Help with breathing

Most babies with CDH will be on a breathing machine (ventilator) before surgery to help them breathe while their lungs are still small and stiff. Some will also be on this machine after surgery until their lungs are ready to take over. Depending on the severity of the CDH, the time on the ventilator may be very short or it may be weeks.

Some babies require ECMO, which stands for extracorporeal (outside the body) membrane oxygenation. This is a type of bypass machine that does the work of the lungs. The baby's blood passes through a tube into the machine, where the blood receives oxygen. Then the blood passes through another tube back into the baby.

Your baby may also need a tube that passes through the nose into the stomach (called a nasogastric tube, or NG tube). This tube can be used to keep air out of the intestines so they don't press on the lungs.

Children's offers all of these services to care for your child.

Surgery

The length of surgery for CDH can vary depending on the size of the hole, how many organs the surgeon needs to move, and how healthy your baby is overall. Before surgery, the surgeon can give you an estimate of how long your child's surgery will take.

At the time of surgery, your child will have general anesthesia. This means we will give your child medicine to make them sleep without pain during the surgery.

There are several ways to perform the operation. The choice will depend on your child's condition. Your surgeon will talk with you about the options and what we recommend for your child. Some children can have the operation performed thoracoscopically. This means surgeons make a few small cuts, or incisions, so they can insert a thin, lighted tube with a camera (called a thoracoscope) and their surgical tools. For other children, surgeons will decide it is best to make a small incision either in the chest or abdomen to perform the surgery (no thoracoscope is used).

After moving the organs, the surgeon will repair the hole in the diaphragm by sewing it closed. If the hole is too large to sew up, the surgeon will attach a patch to close the hole. This patch will stay inside your child's body. There are many materials that can be used for this patch. At Children's we use a patch that has the lowest reported rate of failure in the medical literature. This patch was invented at Children's.

Many children will need a chest tube placed at the time of surgery. This tube allows any fluid that collects in the chest to drain out. The tube usually needs to stay in place for a few days.

After Surgery

After surgery, your child will be in the recovery room for another hour. Most babies then stay in our neonatal intensive care unit (NICU), where they can get the high level of specialized support they need. When they're ready, they move to a regular hospital room as part of their transition toward home.

The length of hospital stay for babies with CDH varies widely. It may be as short as a few days to as long as many months. This depends on factors like the extent of the surgery and how long it takes for your child to breathe well without a ventilator. If the hole in the diaphragm is small and the lungs are a good size and function well, your child may breathe well and be able to go home soon after surgery. If the hole is larger and the lungs are small and stiff, your child may need to have breathing support and stay in the hospital longer.

Your child may go home quickly; if so, the surgeon will see your child for a follow-up visit about two to three weeks after the operation to make sure the incision is healing well. Your child might need to stay in the hospital longer; if this is the case, the surgeon will stay closely involved with your child's care during the entire hospital stay.

After your child goes home, you'll need to keep the incision clean and dry until it heals. The surgery team will teach you how to care for the incision and what kinds of food or medicine to give your child.

Resources

Read more about what to expect when your child visits a clinic at Children's, has surgery here or needs to stay in the hospital. You can get practical details about topics like what to do and bring the day of surgery and who will be on your child's care team. You can also take a virtual tour of our surgery rooms and other parts of the hospital.

To learn more about this condition, you may want to visit our resource list.