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Congenital Diaphragmatic Hernia: More Than Repairing a Hole

Dr. Kuojen Tsao

Dr. Kuojen Tsao

The management and treatment of congenital diaphragmatic hernia (CDH) remains a challenge for all clinicians. Despite advances in prenatal diagnosis, surgical treatment and neonatal critical care, infants born with CDH still accrue a significant mortality and long-term disability. The morbidity and mortality associated with CDH is largely due to pulmonary hypoplasia and pulmonary vascular
hypoplasia/hypertension as well as its associated anomalies.

Over the last 25 years, clinical efforts to avoid lung injury, including extracorporeal membrane oxygenation (ECMO), high-frequency oscillation ventilation (HFOV), and ventilation strategies, have improved overall survival rate, but there remains significant variation among institutions with an overall survival of only 72 percent*.

In the last two decades, the CDH team at Children’s Memorial Hermann Hospital and The University of Texas Health Science Center at Houston (UTHealth) Medical School has been dedicated to providing the most comprehensive and state-of-the-art care for newborns with CDH. The management of infants with CDH is directed by a comprehensive and highly experienced team of affiliated specialists, including maternal-fetal specialists, neonatologists and pediatric surgeons. The fully integrated continuum of care program begins with prenatal diagnosis using the most advanced fetal ultrasound, echocardiography and MRI, in order to provide families and practitioners with the most accurate predicted prognosis. The multidisciplinary team collaborates together on a coordinated delivery plan for the infant in order to provide a smooth transition from prenatal to postnatal life.

Continuum of Care

In the last 20 years, the Neonatal Intensive Care Unit (NICU) at Children’s Memorial Hermann Hospital has successfully cared for the most severe infants with CDH. The hospital’s neonatal ECMO program was the first in Texas and has the most experienced team in the region. In addition, a long-standing, aggressive, surgical approach to the care of CDH babies has resulted in the fewest number of infants without surgical repair, meaning almost every CDH infant is approached as a possible survivor, regardless of associated anomalies or pathophysiology. As a result of this integrated strategy, the hospital’s risk-adjusted outcomes for CDH patients are in the top 15 percent worldwide with markedly lower-than-expected pulmonary morbidity* and this protocoled approach has been adopted by many international institutions.

The care of infants with CDH does not stop at the bedside. Scientists and researchers at UTHealth Medical School, as part of the CDH integrated program, continue to address critical clinical care issues. The Medical School is the home of the Congenital Diaphragmatic Hernia Registry, the largest research database for CDH.

Developed and led by Kevin P. Lally, M.D., M.S., surgeon-in-chief at Children’s Memorial Hermann Hospital and chair of the department of Pediatric Surgery at UTHealth Medical School, the Congenital Diaphragmatic Hernia Study Group is an international consortium of data on more than 7,000 babies with the condition. The advanced fetal and neuroimaging program is studying ways to refine the diagnosis of CDH and its associated neurological sequelae in order to treat the condition either before or after delivery. The fetal intervention research group is developing novel techniques for fetal tracheal occlusion in order to promote antenatal lung growth.

Also, the Children’s Regenerative Medicine Program at UTHealth Medical School is developing cellular-based therapies to treat CDH and ECMO associated neurological injuries and lung growth, as well as autologous diaphragmatic replacement patches from autologous amniocyte stem cells.

For more information about the fully integrated Congential Diaphragmatic Hernia Program at Children’s Memorial Hermann Hospital, please contact The Fetal Center at Children's Memorial Hermann Hospital at 832-325-7288.