Congenital Diaphragmatic Hernia (CDH) in Adults

At Memorial Hermann, we provide advanced and personalized treatment for adult patients with CDH. Along with our affiliated providers,  we have long offered care to pediatric patients with CDH and can bridge the gap for patients who transition out of pediatric CDH care and are in need of adult care for CDH. 

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Congenital diaphragmatic hernia is a complex condition in which a hole in the diaphragm allows abdominal organs to move into the chest cavity, potentially affecting the development of the lungs and other organs. CDH can be a life-threatening condition if not treated by a specialized team promptly after birth. While CDH optimized care in childhood can significantly improve the quality of life, there are cases where ongoing health challenges exist or emerge, leading to issues in adulthood.

As patients with CDH grow into adulthood, they may encounter specific health challenges that require specialized care. Adults with CDH face potential issues, including:

• Gastrointestinal (GI) issues: These may include gastroesophageal reflux, bowel obstructions and other challenges related to the intestines, such as constipation.
• Respiratory challenges: These can lead to shortness of breath, pulmonary infections, or pulmonary hypertension, which can adversely impact a person’s quality of life.
• Pregnancy planning: For female patients, specialized OB/GYN and internal medicine-related care may be necessary before, during, and beyond pregnancy.
• Orthopedic complexities: Challenges with the spine, chest and ribs are among the orthopedic issues that may arise in adult CDH patients.

It is essential to note that these are only some of the known health issues in adult CDH patients, and much is yet to be discovered.

At Memorial Hermann, in collaboration with our affiliated providers, we play a crucial role in addressing the underserved needs of adults who have lived with CDH since childhood. While some adults with CDH may experience no challenges, others require ongoing support throughout adulthood. Our care approach includes:

• Continuum of care - With a collaborative and multidisciplinary team of both adult and pediatric skilled affiliated professionals we ensure seamless care from prenatal and infant stages through adulthood. CDH is treated at Memorial Hermann-Texas Medical Center in Houston, and all services are provided under one roof. This strategic positioning allows us to address unique challenges at different life stages, with affiliated specialists in Pediatric Surgery, Thoracic Surgery, Pulmonology, Adult General Surgery and OB/GYN working together for optimal patient outcomes.
• Specialized women's care - We understand the unique health considerations that women with CDH may face. From obstetrical care during pregnancy to addressing gynecological and internal medicine-related issues, comprehensive and tailored care is available to both mother and baby before, during and after birth in partnership with The Fetal Center affiliated with Children's Memorial Hermann Hospital and The Women’s Center at Children’s Memorial Hermann Hospital.
• Proactive approach - We believe in proactive care, recognizing that each person's journey with CDH is different. Whether you need a full care plan and appointments or have questions and concerns, patients have access to personalized support and guidance for the specific challenges of managing CDH as an adult.
• Global leadership and collaboration - In 1995, affiliated team members from The Fetal Center helped establish the Congenital Diaphragmatic Hernia Study Group (CDHSG), an international consortium of centers that track CDH patient outcomes in a dedicated CDH-focused, international database. To date, the voluntary collaborative has tracked the outcomes of more than 14,000 patients with CDH to gain knowledge of the effects of the disease, interventions and outcomes. The registry, which resides at Children’s Memorial Hermann Hospital and UTHealth Houston, represents centers globally.
• Building on a successful pediatric CDH program - The experienced, affiliated adult CDH team is expanding upon the multidisciplinary approach and outcomes that distinguishes the well-established pediatric care of CDH at Children’s Memorial Hermann Hospital. The pediatric CDH treatment provided by the affiliated team is recognized by the Annals of Surgery as caring for more patients with CDH than most pediatric hospitals in the country. Patients and their families benefit from the experience that comes from treating a high volume of CDH cases year after year, including patients who are unable to be managed by other centers. Much of the research, surgical approaches and long-term patient care discovered in the pediatric CDH clinic is being translated into adult CDH treatment.
• Care anywhere - We also offer telemedicine options for consultations and follow-up appointments, ensuring our patients can access our care regardless of their location.

Advanced Care for Adults

The CDH adult multidisciplinary team is dedicated to providing personalized, compassionate care every step of the way. At the forefront of CDH adult patient care, we offer patients and their families access to:

• Optimized health care transition from a family-centered pediatric approach to a patient-centered adult structure;
• Experience and infrastructure necessary to care for adult patients with an uncommon congenital anomaly;
• Guidance to female patients with unique needs and family planning and pregnancy journeys;
• Care to identify and address common adult CDH challenges, before they become life-threatening conditions;
• Research and outcomes to advance the body of evidence available to help care teams from other centers manage adult CDH patients nationally and internationally;
• A destination clinic and care team ton help minimizes life disruption through optimal scheduling of visits, obtaining and sharing of diagnostics like imaging and labs, and leverages telemedicine where appropriate; and
• Education for adults with CDH on health optimization, prevention of complications and how to optimize quality of life.