Management of Congenital Diaphragmatic Hernia

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In Utero Insights

Congenital diaphragmatic hernia (CDH) is a complex and challenging anomaly. Survival is largely determined by the degree of lung development at term.

At The Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment, we manage more than 60 pregnancies diagnosed with CDH every year — more than any center in the country. This large volume, multiplied over the past 20 years, has given us an uncommon expertise in the prenatal diagnosis and postnatal treatment of this condition, which we’ve translated into advancements that have improved survival. Rigorous follow-up through our unique Pulmonary Hypoplasia Program has helped optimize long-term outcomes.

There remains a significant risk of death and complications in infants with severe CDH, who frequently do not respond to therapies shown to be effective in patients with mild to moderate defects. To help improve survival in these severely affected children, our team recently received FDA approval to conduct a trial of fetoscopic endoluminal tracheal occlusion (FETO) in qualified patients. Our colleagues in Europe have perfected this prenatal treatment and worked with us to apply the treatment in the United States.

We are eager to embark on this feasibility study and offer hope to these families. In this newsletter, you will find a detailed description of FETO, including the enrollment criteria, surgical procedures involved and long-term follow-up care our team provides. We value the opportunity to partner with you to offer this treatment option, and we welcome your feedback.

CDH by the numbers

  • More than 1,220 CDH patient referrals from all over the U.S. and around the world since 1995
  • More than 400 babies with CDH repaired postnatally
  • More than 198 babies with CDH delivered in the SDU since the unit’s opening in June 2008
  • More than 150 babies with CDH treated with ECMO

* Figures as of 6/30/15