Congenital diaphragmatic hernia: Care at home

What is congenital diaphragmatic hernia?

Congenital diaphragmatic hernia (kun-jen-ih-tal di-ah-frag-mat-ik her-nee-ah), is often called CDH. It occurs when the diaphragm (the muscle that separates the chest from the abdomen) does not form completely. A hernia (hole) in this muscle allows some or all of the abdominal organs (stomach, spleen, liver, and intestines) to slide into the chest. Surgery involves putting the abdominal organs back in place and closing the hernia.

Will my child continue to have breathing problems?

Ongoing breathing problems after hospital discharge are very common in babies with CDH, whose lungs may be smaller than usual. Many such babies breathe faster than usual and work harder to breathe. A few children may need oxygen at home.

Breathing problems are usually most severe in the first year of life and improve with age. As lungs grow for several years, symptoms usually lessen. The health care team will review with you signs of breathing problems and any equipment or medicines needed at home to help your child's breathing. Know your child's usual breathing pattern and activity level.

If your child has continuing breathing problems at discharge, they should receive shots to help prevent RSV (respiratory syncytial virus) infection during cold and flu season. This is generally from November through April for the first 1-2 years of life. (See the education sheet on RSV). Your primary care doctor will arrange these. We also recommend all family members over age 6 months receive an annual flu shot.

How should I feed my child?

Children who had a CDH often have feeding problems. Your baby may be slow to feed at first and may throw up a lot. Usually time, patience, and practice will help. The doctor will tell you what to expect at home and when you should be concerned.

Most children with CDH have a problem called gastroesophageal reflux (gas-troh-eh-sof-ah-jee-al ree-flux, or "GER.") GER is the backup of stomach contents into the esophagus (tube between the mouth and stomach). GER usually gets better with time. Sometimes different feeding techniques, upright positioning, or medicines are needed. A few children need surgery for this. (See the education sheet "Gastroesophageal reflux.")

Slow weight gain is very common. If your child has to work harder to breathe, more energy or calories are used. This usually improves as the child grows. If a special diet is needed, the health care team will review the plan with you.

When does my child need to see the doctor again?

You will need to choose a primary care provider (pediatrician or family doctor) to care for your child's health and development. Your baby's neonatologist will tell you when to make your first appointment. The neonatologist will talk with your baby's doctor before your child goes home. They will review what has happened to your child since birth and what is expected after going home.

You will be given a copy of the discharge summary sent to your child's doctor. We encourage you to take this with you whenever you see the doctor for the first 6 months. It can be very helpful when answering questions.

If your child had pulmonary hypertension (high pressure in the blood vessels in the lungs) that did not resolve prior to discharge, follow up with a cardiologist (heart doctor) will be arranged within 3 months of discharge.

Hearing loss occurs in many patients with CDH. Although your baby's hearing may be normal now, hearing loss can occur after leaving the hospital. It is very important to have a formal hearing test performed by an audiologist every 6 months until the age of 3 years, then annually until age 5 years. Your doctor can help arrange for the hearing tests.

Follow up chest x-rays are indicated only if your child required an artificial patch to repair the hole in the diaphragm, or if they have continued breathing problems. If a patch was used, an x-ray is recommended every 6 months until age 18 months, and then yearly until age 16 years.

Your child may need to see other specialists, such as a pulmonologist (lung doctor), a surgeon, or both for further care. Your child will also need to return to the Children's NICU follow-up clinic to monitor growth and development. Staff will contact you to schedule your child's first visit around 9 months of age.

What problems should I watch for?

If your child's incision is not healed, check it every day for signs of problems.

When children who had CDH get a cold or pneumonia, they may be sicker than other children. They may even need to be in the hospital. Be sure to watch for signs of breathing problems.

After abdominal surgery, adhesions (scar tissue) may develop. In some cases, this can cause a blockage in the intestine, pain, and persistent vomiting. This could happen at any time, even years from now.

There is also a rare chance that the hernia could open up again and the intestines would go back into the chest. Signs of this might be vomiting that continues or worsening breathing problems. The breathing problems this causes are usually much less severe than those of a newborn with CDH. Return of the hernia can be diagnosed with a chest X-ray. Surgery would be needed again to fix the hernia. While this can happen to any child who had CDH, it is more likely if your child required a "patch" to fix the hernia.

Scoliosis (curve in the spine) has been noted more often in children with CDH. It should be watched for during routine exams until your child has reached full adult height.

When should I call the doctor?

• incision appears red or swollen, has drainage, or opens up
• pain in the belly
• vomiting that does not stop
• vomit is dark green or dark gold
• refusing to eat or play
• breathing harder or faster than usual
• chest skin sucks in with breaths
• nostrils flare (open wider) with breaths
• wheezing or grunting with breaths
• coughing very hard
• lethargy (very inactive, floppy)
• very irritable
• if your child has a gray or blue color, or is short of breath, call 911!

Questions?

This sheet is not specific to your child but provides general information. If you have any questions, please call your child's doctor.

Children's Hospitals and Clinics of Minnesota
Patient/Family Education
2525 Chicago Avenue South
Minneapolis, MN 55404
Last reviewed 8/2015 ©Copyright

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