Children’s Memorial Hermann Hospital and the McGovern Medical School at UTHealth operate the only long-term multidisciplinary follow-up clinic dedicated to congenital diaphragmatic hernia (CDH) in the southwestern United States. Staffed by a team of CDH experts skilled at meeting each child’s specific needs, the clinic offers parents the convenience of seeing every involved specialist in a single visit under one roof. It also gives doctors the opportunity to collect data and better understand the challenges faced by families of children with CDH.

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Why Is Long-Term Follow-Up Important and What Can I Expect at This Clinic?

CDH Team discusses careLong-term follow-up allows doctors to screen for, identify, and treat the complications of CDH before they become very serious problems. Thanks to modern medical treatment, children born with CDH are living longer, more productive lives.

At the clinic, affiliated pediatric surgeons, pulmonologists, pediatricians, nutritionists, gastroenterologists, cardiologists, and developmental psychologists work together as a team to treat the complex disorders associated with CDH. They see patients in a single visit, according to a structured schedule that depends on their age, CDH classification (see below), and the severity of the disorder(s). Imaging scans are done in the morning, and patients see their specialists in the afternoon. This structure allows for the kind of team-based decision-making that can occur only when all doctors are on the same page, managing the needs of your child.

How Long Will My Child Be Seen in the Long Term Follow up Specialty Clinic?

The CDH specialists follow children through the age of 18, when they are considered adults. The number of clinic visits necessary each year depends on the severity of the hernia, the age of the child, and any complications they have. Physicians and families work together to develop the best care plan, customized for each child’s individual needs.

What Long Term Follow up Is Provided to My Child?

Doctor talks with CDH PatientComplications and long-term health effects from CDH depend greatly on the severity of the case. Following proper post-delivery care and CDH repair, some babies will mature normally and experience no life-long complications. On the other end of the spectrum, CDH does prove fatal in some instances despite the best efforts of parents and physicians. Most babies, though, will fall between these extremes and experience some long-term respiratory, gastrointestinal, neurological or other health issues ranging from asthma to chronic lung disease to scoliosis. After discharge from the hospital, a team of pediatric specialists will continue to care for the baby.

How Does the High-Risk Multidisciplinary Clinic for Cdh Help My Child and Others?

Specialists at the High-risk multi-disciplinary Clinic for Congenital Diaphragmatic Hernia track a range of outcomes for all the patients they see. This allows the team to create a rich source of long-term data, learn more about the long-term challenges of CDH, and identify the best interventions for each child.

Doctors tie the data they collect to decisions about future research, enabling researchers to positively impact patient outcomes throughout the timeline of patient care.

Why Should I Choose the Fetal Center for My Child's Care?

The Fetal Center at Children’s Memorial Hermann Hospital is a national referral center and an international leader in fetal diagnosis, fetal intervention and comprehensive fetal care for infants with congenital anomalies or genetic abnormalities. The affiliated physicians at The Fetal Center offer patients the full array of prenatal testing and fetal interventions through a coordinated program for both mother and baby. From the initial prenatal consultation through pediatric follow-up visits, specialists at The Fetal Center work closely with mothers, families and their referring physicians to provide evidence-based care and treatment, as well as provide support, counseling and education.

The Fetal Center Approach and Outcomes:

Home to an integrated CDH team that includes pediatric surgeons, neonatologists, pediatric anesthesiologists, pediatric sub-specialists, and maternal-fetal medicine specialists, The Fetal Center provides optimal and seamless care from prenatal diagnosis to delivery and through postnatal care. Physicians at The Fetal Center take a very aggressive approach to the management of the condition, and are one of a handful of teams in the country that operate on 93 percent of all patients, repairing the hole in the diaphragm surgically to give each child a chance of survival.

Thanks to more accurate prenatal diagnosis and the work of the International CDH Study Group and Registry, which resides at Children’s Memorial Hermann Hospital and McGovern Medical School at UTHealth, the global survival rate of infants born with CDH is steadily rising. Based on risk-adjusted data, The Fetal Center’s outcomes are in the top 10 percent or higher.

Research:

Physician researchers at The Fetal Center are faculty at McGovern Medical School at UTHealth, and are actively engaged in an intensive research program focused on the mechanisms, treatment, and cure of CDH and other fetal disorders. A national leader in research, The Fetal Center is one of only three U.S. centers to hold membership in all three key maternal-fetal research networks: the National Institute of Child Health and Human Development (NICHD) Neonatal Research Network, NICHD’s Maternal-Fetal Units (MFMU) Network and the North American Fetal Therapy Network (NAFTNet).

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