Recovery After CDH Surgery
The recovery process and timeline after CDH surgery is different for every baby and depends on the severity of their condition and response to treatment. Typically, a baby’s hospital stay after CDH surgery will fall between 8-12 weeks. This timeline may be extended for babies who are treated with ECMO or experience persistent pulmonary hypertension. While this recovery timeline seems long, babies with CDH are recovering from more than just their surgical procedure.
Although their abdominal organs are moved into the right place during surgery, their lungs remain underdeveloped, so babies will usually require breathing support from a ventilator for a period after the operation. Babies who need ventilator support will stay in the NICU, where recovery will focus on weaning off the ventilator. As the lungs develop, babies are gradually taken off the ventilator, and at this stage they are considered stable. They will be moved to a surgical hospital room where their recovery will focus on weight gain and developing their feeding and breathing skills.
When a baby is ready to start feeding, the activity is closely supervised by a feeding specialist team because it is the first time the baby’s stomach and intestines have received food. During this process, nutritional needs of the baby will continue to be supplemented by an IV. When a baby can gain weight only by oral feedings, they are ready to head home.
When your baby is discharged from CHOC, these follow-up appointments will be scheduled for you:
- Pediatrician visit within 1-3 days
- Surgeon appointment within 2-3 weeks
- Appointments with any other specialists on your baby’s treatment team
CDH Surgery Follow-Up Care at Home
After babies with CDH are sent home, they require multidisciplinary follow-up care to ensure they are meeting their developmental milestones. While some babies will only need periodic follow-up appointments, about 15-20% of babies will continue to require oxygen support or occasionally a temporary feeding tube at home. Our team of specialists will collaborate to develop the best follow-up care plan for your baby and make sure your family is comfortable with all home follow-up care procedures and treatments.
- Oxygen support. Your baby’s breathing will continue to be supported by oxygen from a tank through a tube in their nose. The specifics of your baby’s oxygen treatment will be determined before sending them home. Before discharge, you’ll be outfitted with the proper equipment and trained on using the equipment and proper dosage.
- Feeding tube. Your baby’s feeding will continue to be supported by a tube “button” that goes directly into the stomach or intestine to assist their nutrition and growth as they develop feeding skills. The specifics of your baby’s nutritional treatment will be determined before sending them home. Before discharge, you’ll be outfitted with the proper equipment, trained on using the equipment and coached on proper feeding schedule/volume. Learn more about caring for an infant with a feeding tube.
Complications of CDH
While most babies who have CDH repair surgery live everyday lives, some complications can occur in children with more severe cases.
CDH Respiratory Issues
Respiratory problems are common in children with CDH because of their delayed lung development. Due to lung hypoplasia, or small lungs, children with CDH may get tired easily or have respiratory issues, like asthma, but these conditions can usually be improved with medications.
- Respiratory syncytial virus. Babies with CDH are at high risk of becoming infected and hospitalized with respiratory syncytial virus. RSV is a common cold virus that causes bronchiolitis (inflammation of the small airways in the lungs). RSV prevention programs are recommended for babies with CDH. Learn more about CHOC’s RSV Prevention Program.
- Pulmonary hypertension. Pulmonary hypertension occurs when the blood vessels in the lungs remain constricted as blood flows through after birth. It can cause breathing to be difficult, even on a ventilator. Babies born with CDH can experience pulmonary hypertension. The condition will be monitored via echocardiogram and evaluated by cardiac catheterization if it doesn’t resolve on its own.
CDH Gastrointestinal Issues
Children with CDH may require more daily calories than infants without CDH because it takes more energy for them to breathe and continue developing their lungs. As a result, some infants with CDH will need higher concentration breast milk or formula. Our dietitians will send you home prepared, with an outlined meal plan and recipe. Some babies will continue to need a high-calorie, high protein diet through childhood. Along with these considerations, children with CDH may also experience other gastrointestinal issues:
- Gastroesophageal reflux (GER). It’s common for children with CDH to suffer from GER, or persistent gastroesophageal reflux. GER can result in vomiting, heartburn and pain with feeding, breathing issues, apnea and hindered growth. To mitigate episodes of reflux, most children will take anti-reflux medications.
- Constipation. Children with CDH often suffer from constipation. Reasons for this are not known, but constipation in children with CDH can often be relieved with regular pediatric laxatives that your child’s doctor has approved.
- Bowel obstruction. Bowel obstruction can happen when scar tissue develops inside the abdomen at the repair site of your child’s hernia, causing a kink in their bowels that blocks liquid from flowing in the intestines. Symptoms include green vomiting, pain and crying, abdominal distension and low appetite. If your child experiences any of those symptoms, take them to the nearest emergency room.
CDH Skeletal Development Problems
All children who are ill and hospitalized for long periods have a high risk of experiencing developmental delays. Early detection of any delays is important to start treatment and maximize a child’s potential. It’s important that families of children with CDH follow the recommended check-up schedule outlined by their child’s treatment team.
- Scoliosis. Scoliosis can develop in children with CDH, likely due to the asymmetry in their chest. The lung on the side of your child’s hernia will typically be smaller than the lung on the other side of their chest. This unevenness can allow their spine to curve toward that side during growth.
- Hearing loss. Hearing loss is a known side effect in children who have been intubated on a ventilator, taken multiple medications or been treated with ECMO. As a result, hearing tests will be performed on your baby before discharge. However, hearing loss can develop later. Follow-up testing is recommended and will be outlined for your child. Hearing loss has been much less common in recent years.
Some children will require more than one surgery to repair their congenital diaphragmatic hernia. A second surgery is typically needed in children born with severe CDH, where a synthetic patch was used to repair the hole in the diaphragm. The child’s growth can cause the patch to pull away from the chest wall resulting in a recurrence. CDH recurrence symptoms can include:
- Raid breathing
Some children will exhibit no symptoms. However, if you think your child has a CDH recurrence, take them to the emergency department and explain their condition and your suspicions.
Long-Term Management of CDH
The long-term management of your child’s CDH is largely related to the severity of their condition and the hernia’s placement, as well as the development of any other complications (listed above). However, most children with CDH treated at CHOC will meet expected growth and developmental milestones. Your child will require long-term follow-up care tailored to their individual needs to ensure their ongoing developmental success. Here is an example chart of the recommended long-term follow-up care through age 16.