About The Comprehensive Center for Congenital Diaphragmatic Hernia Care
No matter where you live or what you already know about congenital diaphragmatic hernia (CDH), the affiliated specialists at Children’s Memorial Hermann Hospital are here to help. Approximately 1,000 babies are born each year with CDH – many of them go on to live a happy, healthy life without limitation.
CDH is a complex disease that requires special, focused expertise to optimize outcomes. Fetal and pediatric specialists affiliated with The Comprehensive Center for CDH Care aim to provide families with a coordinated care approach from fetal diagnosis, delivery, neonatal care, through long term multidisciplinary follow up for patients, aiming to provide families with a one-stop-shop approach to their child’s health care needs. The affiliated clinic coordinators provide families with a seamless care transition from The Fetal Center to the affiliated neonatal and pediatric specialists, and, ultimately, to the outpatient long-term CDH team.
One of the best things you can do for your child right now is to learn about CDH. Some of the information you may find is difficult to hear and some of the information available on the internet may not apply to you and your child. We have dedicated online educational resources to help you understand CDH, including the organs most affected, the wide range of severity, the process of the medical care involved, and the treatments that can help your child.
Congenital diaphragmatic hernia (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 absence of the diaphragm.
An absent or partially formed fetal diaphragm allows the organs in the abdomen (stomach, intestines, liver, spleen, kidneys) to move into the chest cavity 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. CDH may also cause high blood pressure in the arteries of the lungs (pulmonary hypertension), requiring the baby’s heart to work harder to pump blood to the arteries. Over time, the heart may weaken, resulting in heart failure. Many infants with CDH may have other complications, such as developmental problems with the brain, kidneys and bowel. All of the abnormalities are usually inside the body – the child’s face and external body is almost always completely normal.
While the exact cause of CDH is unknown, it is a complex disease that requires special and focused expertise to optimize patient outcomes. Parent resources are provided at Children’s Memorial Hermann Hospital to help families understand all aspects of CDH, including the organs most affected the wide range of severity, the process of the medical care involved, and the treatments that can help your child.
When CDH is diagnosed during pregnancy, the affiliated specialists at Children’s Memorial Hermann Hospital closely monitor mother and baby, while working with families to determine the best plan of care for treatment and delivery. The Fetal Center offers a fetal surgery procedure, FETO intervention, as an option before birth, which may improve outcomes in babies with the most severe forms of CDH. It is a priority of the team to educate patient families on available treatment options to help them make informed care decisions.
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The affiliated, multidisciplinary team at Children’s Memorial Hermann Hospital offers patient-centered care for babies born with CDH, educating families about postnatal treatment options and long-term follow-up. Involving families as part of the care team, the specialists in the Department of Pediatric General & Thoracic Surgery carefully develop the best treatment plan, customized for each child’s individual needs. Utilizing extensive experience and expertise, the affiliated physicians collaborate with multidisciplinary specialists to offer the best care possible and continue to improve patient outcomes.
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Research for CDH
The affiliated physician researchers at Children’s Memorial Hermann Hospital are actively engaged in an intensive research program focused on the mechanisms, treatment, and cure of CDH and other fetal disorders with the goal of improving patient outcomes. To learn more about The Fetal Center’s involvement in an ongoing research trial (The FETO trial) or the Department of Pediatric Surgery’s International CDH Study Group and Registry, visit the links below:
Research trials under way include:
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Baby Luke's Battle With CDH
Expecting identical twins, Megan and Ryan Webb learned one of their babies had a Congenital Diagrammatic Hernia (CDH).
Read the full story »
Grace’s Story: Overcoming CDH
Marlen and Kevin turn to the Fetal Center after their unborn baby, Grace, was diagnosed with CDH.
Read the full story »
Gavin’s Story: Filling the Gaps
A surgery reverses a newborn’s rare, life-threatening defect.
Read the full story »
Why choose Children’s Memorial Hermann Hospital?
Home to one of the most comprehensive CDH programs in the United States, Children’s Memorial Hermann Hospital combines affiliated specialists in fetal intervention and postnatal treatment, a CDH high-risk follow-up clinic and basic and translational research, all located at the same institution with an integrated team. The affiliated team of surgeons and physicians has a long, dedicated history of caring for newborns with CDH and has developed several advances in the postnatal treatment of this condition.
By utilizing expertise from OB/GYN, maternal-fetal medicine, neonatology, pediatric surgery, and pediatric anesthesiology, the multidisciplinary team provides optimal and seamless care from prenatal diagnosis through delivery, postnatal care and long-term follow-up. In addition to the full range of specialists, Children’s Memorial Hermann Hospital has the ability to transport patients through Memorial Hermann Life Flight, a critical care air ambulance service serving Houston and surrounding communities. Children’s Memorial Hermann Hospital established the first organized program for pediatric extracorporeal membrane oxygenation (ECMO) in Houston. The neonatal critical care services include a 118-bed Level IV Neonatal Intensive Care Unit, the highest NICU level, caring for the most acute patients. Physician specialists and nurses use high-tech therapies and advanced equipment without losing sight of the value of human touch to the infants in their care. This treatment approach has translated to higher-than-expected risk-stratified survival, as well as one of the highest rates of surgical repair in the world.
How to choose the right place for you, your family, and your child?
There are so many factors to consider when thinking about embarking on care for you and your baby. The list below includes important factors to consider when choosing where to seek care.
Does the hospital or institution:
- Have a team dedicated to CDH?
- Have a fetal center?
- Have a high-risk birthing center?
- Have a Level IV NICU?
- Have pediatric surgeons who routinely manage CDH?
- Have ECMO expertise?
- Have a dedicated, multidisciplinary CDH clinic for ongoing care after discharge?
- Have a track record for publishing CDH research?
- Care for more than 10 patients with CDH every year?
Children’s Memorial Hermann Hospital offers comprehensive treatment options for CDH care. Irrespective of the severity of your child’s CDH, the affiliated team will be able to offer you the most advanced care available including:
- A comprehensive CDH team – The care of these infants requires a large team of doctors, nurses, and specialists who combine their individual areas of focus to optimize the overall care plan. Care is often 24 hours a day, 7 days a week from before delivery though discharge from the hospital.
- The Fetal Center – CDH care starts from the moment of diagnosis. Accurate diagnosis, prenatal monitoring, counseling, and prenatal intervention require a team of specialists focused on the care of the unborn child.
- The Women’s Center – a high-risk birthing center with private, state-of-the art labor and delivery suites featuring superior clinical equipment, in addition to amenities for your convenience and comfort. The staff is trained to care for all childbirth needs.
- A 118-bed Level IV neonatal intensive care unit (NICU).
- Specialized pediatric surgeons
- An ECMO team.
- Long-term follow-up clinic.
- Research focus.
- High volume capacity.
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.
Pediatric General & Thoracic Surgery
6410 Fannin Street, Suite 950
Houston, Texas 77030
Office Hours: 8 a.m. to 5 p.m. (Monday-Friday except major holidays)
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- Aggressive surgical management of congenital diaphragmatic hernia: worth the effort? A multicenter, prospective, cohort study. Harting MT, Hollinger L, Tsao K, Putnam LR, Wilson JM, Hirschl RB, Skarsgard ED, Tibboel D, Brindle ME, Lally PA, Miller CC, Lally KP for The Congenital Diaphragmatic Hernia Study Group. Annals of Surgery (in press as of 1/28/2017)
- The congenital diaphragmatic hernia study group registry update. Harting MT, Lally KP. Seminars in Fetal and Neonatal Medicine 19(6):370-5, 2014. PMID: 25306471
- Congenital diaphragmatic hernia defect size and infant morbidity at discharge. Putnam LR, Harting MT, Tsao K, Morini F, Yoder BA, Luco M, Lally PA, Lally KP for the Congenital Diaphragmatic Hernia Study Group. Pediatrics 138(5), 2016. PMID: 27940787