Congenital diaphragmatic hernia repair

UF Health Shands Children’s Hospital is one of the few children’s hospitals in the country that has a whole program based on caring for patients with congenital diaphragmatic hernia. From prenatal diagnosis, evaluation, and counseling, through exacting and consistent care of CDH newborns from birth to discharge, to dedicated CDH follow-up, our program has a structure dedicated to providing CDH children the highest levels of outcome and follow-up available anywhere.

CDH is a congenital malformation that occurs when the diaphragm on one side fails to fully develop during pregnancy. Since this muscle separates the chest from the abdomen, abdominal organs migrate into the chest, where they impede lung development and push the heart to the other side. This condition has a spectrum of severity, but it can lead to lungs that are barely large enough to support life. Nationally, a third or more of these babies die even when treated at good centers.

Most cases of CDH are diagnosed before birth, and parents may be given a poor prognosis for their unborn child. At UF Health, our program specializes in the care of CDH, and while we can never promise survival or a specific outcome, we believe that each CDH baby deserves a chance. We have treated over 300 CDH infants, and for patients that don’t have a second life-threatening birth defect in addition to their CDH, survival approaches 90% (99% for left CDH with liver in abdomen, 92% for right CDH, and 75% for left CDH liver in chest, overall 88%. Annals of Surgery 2013).

UF Health Shands Children’s Hospital has been treating children with CDH for over 20 years. Our multidisciplinary team of specialists provides around-the-clock care for CDH babies, from birth to discharge, emphasizing lung protection, brain protection, and an individualized treatment strategy based on risk stratification.

As part of an academic health system, we are actively involved in research about the treatment of CDH to increase survival rates and optimize outcomes. Since the program’s start, we have consistently employed gentle ventilation techniques to avoid further damage to a baby’s lungs. We continue to evaluate ways to improve outcomes, including identifying the best ways to improve lung function and long-term neurodevelopment.

The treatment strategy for UF Health Shands Children’s Hospital includes:

• Prenatal consultation: In addition to multidisciplinary prenatal consultation with neonatology and maternal fetal medicine, we understand that many of our patients travel from great distances. A diagnosis of CDH can be overwhelming, and we believe that early consultation with an expert to answer your questions is important. That is why we offer prenatal consultations via telehealth so you can be seen sooner and without the need to travel if your unborn baby is diagnosed with CDH.
• Gentle ventilation: Our ventilator management focuses on gentle ventilation to protect the fragile, underdeveloped lungs and prevent secondary injury that can have long-term sequelae. We understand the complex physiology of CDH in addition to the surgical considerations.
• Extracorporeal membrane oxygenation (ECMO): A heart-lung bypass procedure may be needed to support the most severely affected (30%) of these babies. The goal is always to minimize the need for ECMO while maximizing the benefit for those patients that do need it.
• Surgical repair: Dedicated and careful surgical repair is essential to CDH, and we utilize evidence-based protocols for variable surgical repair timing to optimize the benefits of CDH repair while minimizing risk.
• High level of consistency of care: One team and protocol oversees the totality of care from birth to discharge, including the ventilation, repair and extracorporeal membrane oxygenation (ECMO) if needed.
• Long-term follow-up: We believe that coordinated follow-up care provides the most comprehensive care to your child and your family.

Our community and patient programs provide great value to patients, families and loved ones. People can find support, educational materials, expert consultants and more. In most instances, these programs are offered free of charge.