Long-Term Follow-Up Care and Outcomes

Long-term follow-up care is a critical component of care for babies with CDH, as many children often have long-term health issues. These issues depend on the severity of the defect and any related problems.

At Texas Children’s, our core group of pediatric surgeons, pulmonary (lung) specialists and dedicated practice providers follow your baby through the years as they grow.

Our team works closely with your family to assess your baby’s changing needs and monitor the child for long-term health issues, including:

  • Lung problems – Potential issues may include the inability to wean off the ventilator, a continuing need for oxygen support, chronic lung disease, asthma and persistent pulmonary hypertension (high blood pressure in the lungs).
  • Feeding difficulties - Many babies with CDH need a feeding tube placed in their nose or stomach to get adequate nutrition. Even with a feeding tube, some babies have difficulty gaining weight, especially in the first year of life.
  • Heartburn - Gastroesophageal reflux is common in babies with CDH. Heartburn is often treated with medicine, but some babies may need a separate operation to treat the reflux.
  • Development - Potential developmental problems may include hearing loss and developmental delays. Babies who require ECMO are at greatest risk for more serious neurological problems.
  • Scoliosis - Some children develop scoliosis, an abnormal curvature of the spine.

Before your infant is discharged from our NICU, we will schedule your appointment at our multidisciplinary clinic, where all of your baby’s CDH care is coordinated in one location.

Texas Children’s CDH Outcomes Clinic and Complex CDH Clinic

Two clinics that provide comprehensive, multidisciplinary postnatal care for patients with CDH

Texas Children’s Hospital offers two postnatal follow-up clinics for patients with congenital diaphragmatic hernia, the CDH Outcomes Clinic and the Complex CDH clinic. Both clinics allow our patients to be seen by a multidisciplinary team, including pulmonary hypertension and pediatric surgery.

The CDH Outcomes Clinic launched in 2018 to provide routine follow-up care and monitor outcomes after surgery for stable CDH patients who do not need any supplemental oxygen or pulmonary medication. At each appointment, parents can expect their child to undergo follow up testing which may include growth measurement, chest x-ray, and pulmonary function testing. Results will be reviewed by pediatric surgery and pulmonary care teams for evaluation of surgical outcomes, pulmonary function, nutrition, developmental pediatrics and more. Other topics reviewed are the current status of developmental milestones and neurological development. Patients under the age of 1 are typically seen every 3 months. Patients 1-2 years old are seen every 6 months. Patients who are 3-18 years old are seen annually. However, this schedule can vary based on each patient and their needs. Parents can discuss any questions or concerns they have regarding continued prognosis for their child with congenital diaphragmatic hernia.

The Complex CDH Clinic opened in April 2019 to extend multidisciplinary care to CDH patients who require additional oxygen supplementation, chronic ventilator support or pulmonary hypertension medications. These patients are more complex, with more postnatal complications and require closer follow-up care and support. Similar to CDH Outcomes Clinic, parents can expect testing to include measurement of growth, chest X-ray and pulmonary function testing. Bloodwork, echocardiography and a six-minute walk test may also be performed. In addition to pulmonologists who are specialized in pediatric pulmonary hypertension and management of tracheostomy/ventilator-dependent children, the clinic is staffed by members of Pediatric Surgery and respiratory therapists.

For more information about Texas Children’s Hospital’s congenital diaphragmatic hernia programs, please call the following numbers:

  • CDH Complex Clinic 832-822-3696
  • CDH Outcomes Clinic 832-822-3135