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.
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. Learn more about our approach to care for adults living with CDH.
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.
When Elizabeth came in for a second scan a week later, things felt off. The ultrasound technician kept going back to the same spot, muttering about the baby's diaphragm. Finally, she broke the silence with, "I can't see his diaphragm. It's there... and then it stops. I need to contact your OBGYN....
The majority of Teemer’s pregnancy was uneventful, and she felt healthy, happy and excited. But as she neared the 34-week mark, she began experiencing an unrelenting migraine for three consecutive days. Concerned, she sought medical attention at the hospital where she worked, just to ensure...
Rewind to the year 2020. Evan and his wife, Rachel, were expecting their first child. Rachel was several months pregnant and in the process of completing years of study for a PhD. It was during this time that Evan noticed that something wasn’t quite feeling right with his health.
Aryah plays basketball. She cheerleads. She rides horses. She jumps on the trampoline and loves water slides. “She’s ahead of the curve for her age,” says Courtney. But that wasn’t always the case. Before Aryah was born, Courtney and her husband, Robert, learned that their baby had congenital dia...
Courtney and Robert both remember the feeling of pure joy in January 2016 when finding out they were pregnant with their second child – a baby girl – after three years of trying. Their happiness soon gave way to worry, though, when Courtney’s obstetrician said her ultrasound sca...
Amy Sager was 20 weeks pregnant with her second child when, during a routine ultrasound, she found out she was carrying a boy. But for Sager and her husband, Kevin, what should have been a joyous moment soon gave way to concern. The baby’s heart, the obstetrician informed them, was pushed to the ...
For some parents, a newborn’s cry can cause distress. But for Marlen and Kevin, hearing their daughter Grace’s first cry brought relief and joy. Grace was born with a congenital diaphragmatic hernia (CDH), a condition that occurs during fetal development that can lead to severe respiratory and ot...
Jayden and Luke. Two-year-old identical twin boys. They run and wrestle, giggle and converse in their own shared lingo – jibber-jabber only they understand. But Jayden is taller, more robust. Luke wears the same size clothes as the boys’ younger brother Cooper. Each of the twins in his own way is...
If you have any questions, use the online tool below to help us connect with you. To refer a patient or schedule an appointment, please contact our clinic using the information below.
To contact Children's Memorial Hermann Hospital, please fill out the form below.
