Congenital diaphragmatic hernia (CDH) is a complex condition that requires immediate care from a team of specialists upon diagnosis, which can be a vital component to successful outcomes for patients. CDH affects approximately 1,000 babies each year[1] and many will have severe complications at birth and throughout childhood. While the exact cause of CDH is unknown, CDH care must involve specialized expertise to optimize outcomes.
With more than 40 years of CDH experience, Children’s Memorial Hermann Hospital is a national referral center that includes a team of specialists dedicated to fetal, neonatal and long-term care of children born with CDH. Through the collaboration of affiliated specialists from McGovern Medical School at UTHealth, fetal, neonatal and pediatric specialists work in concert to provide families with a continuum of care from diagnosis and treatment, through delivery, neonatal care and long-term follow-up care – all conveniently located at the same facility.
Based on risk-adjusted data, Children’s Memorial Hermann Hospital’s CDH postnatal outcomes rank in the top 10% or higher worldwide.
CDH occurs when there is an opening in the diaphragm, the muscle that separates the organs in the abdomen from the organs in the chest. The abnormal development of the diaphragm, occurring before birth, causes a hole in this muscle that helps control breathing and is linked to the development of the lungs. CDH may range from a small hole, or hernia, to the complete lack of the diaphragm.
As a result of an absent or partially formed fetal diaphragm, the abdominal organs (stomach, intestines, liver, spleen, kidneys) move into the chest opening during pregnancy and crowd the baby’s heart and lungs. This can lead to compression and underdevelopment of the lungs (pulmonary hypoplasia), and potentially life-threatening breathing difficulties after birth. While most infants with CDH improve following surgery, some may have challenges with other organs (brain, intestines, etc) and some children need additional surgery (feeding tube, bowel blockage, hernia recurrence, etc). Fortunately, these challenges and complications are almost always repairable. Moreover, almost every affected system is inside the body – the child’s face and external body are typically normal.
Children’s Memorial Hermann Hospital and affiliated physicians provide families with a continuum of care and resources for their child’s health care needs from fetal diagnosis, through infancy, childhood and into adulthood.
The affiliated physician researchers at Children’s Memorial Hermann Hospital are actively involved in research projects focused on the mechanisms, treatment, and cure of CDH and other fetal disorders with the goal of improving patient outcomes. Visit the links below to learn more about innovative research projects aimed to improve patient outcomes.
Research trials under way include:
Completed clinical trials with published results:
*The Fetal Center will continue offering the FETO intervention procedure to patients diagnosed with a severe CDH who qualify.
As leaders in CDH research, our affiliated physicians are pushing the envelope aiming to improve long-term outcomes for kids with CDH. The multidisciplinary physician team has played a major role in the continued advancement of CDH care, having cumulatively published more medical journal articles on CDH than most centers in the world, providing education on CDH by teaching courses locally and giving lectures throughout the country, and furthering research by gathering data to track long-term outcomes. The affiliated team’s long history of dedication to advancing CDH research and outcomes has resulted in the program’s position as a national referral center.
Finding the best care means finding the best team. At Children’s Memorial Hermann Hospital (CMHH), we approach every CDH patient as a potential survivor. Physician specialists and nurses use high-tech therapies and advanced equipment without losing sight of the value of human touch to the infants and children in their care. This approach has translated to higher-than-expected risk-stratified survival, as well as one of the highest rates of surgical repair in the world.
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