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There are many ways you can help children and their families get the care they need.
The Congenital Diaphragmatic Hernia Program at Boston Children's Hospital is dedicated to treating and managing long-term follow-up care for children born with this complex health concern. With CDH, the diaphragm does not fully develop, which allows abdominal organs to go into the chest, preventing normal lung development. In many cases, diaphragmatic hernias can be successfully treated in newborns, and the outlook for babies born with CDH is increasingly positive.
CDH patients require follow-up care and treatment over time to minimize related health concerns, such as lung problems, breathing difficulties, gastrointestinal problems and growth and development concerns.
Boston Children's treats more than 20 newborns with CDH each year, with a success rate among the best in the world. Boston Children's survival rate is close to 90 percent, while the national average is only 50 percent.
When CDH is diagnosed or suspected during pregnancy, treatment is coordinated through Boston Children's Advanced Fetal Care Center. Children also come into the care of the program when CDH is diagnosed after birth, and on an outpatient basis for long-term treatment.
The bottom line: If your child has CDH, you're in the right place.
Every incidence of CDH is unique in terms of its severity and related anomalies. At Boston Children's, careful management of the mother's pregnancy, stabilization of your baby and postnatal treatment have resulted in extremely high success rates.
Care at a hospital like Boston Children's that is equipped with extracorporeal membranous oxygenation (ECMO) is important. And, a group of doctors and scientists at Boston Children's are working to discover genes that cause CDH and abnormal lung development in an effort to improve survival and quality of life.
The CDH team at Boston Children's Hospital is dedicated to improving outcomes for children born with congenital diaphragmatic hernia. Twenty years ago, about one in five babies with CDH survived. Today the national average is 60 percent; at Boston Children's Hospital it's 90 percent.
The program brings together physicians, nurses, and other care providers across specialties to coordinate treatment based on each patient's needs. The multidisciplinary team includes pediatric surgeons as well as specialists in pulmonary medicine, gastroenterology, otolaryngology, cardiology, orthopedics, child development, nutrition, and genetics.
When CDH is suspected prenatally, Boston Children's Advanced Fetal Care Center assists families through a coordinated program of care, including diagnosis and counseling, prenatal monitoring, treatment at delivery, and postnatal care.
Some babies come into the program when diagnosis is made after birth. In addition, the team oversees an outpatient CDH clinic. Established in 1989, the clinic monitors and treats the long-term health needs of CDH patients, from early childhood through college age.
The CDH Program at Boston Children's is a national and international resource for parents and physicians. Team members also actively participate in ongoing innovative research focused on the treatment and understanding of this life-threatening birth defect.
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