For babies born with CDH, every little detail matters and can impact the outcome. It is important that your baby be treated by a team with experience caring for babies with CDH.

At CHOP, we see nearly 50 babies every year with CDH - more than anyone in the U.S. Our Neonatal Surgical Team is the only team of its kind in the world, working together since 2004. Your baby will be cared for using optimal care guidelines developed by our experienced multidisciplinary team.

In addition to surgical repair, your baby may require specialized equipment such as the oscillator ventilator, heart lung machine (ECMO) or nitric oxide, but it is important that they have immediate access when necessary.

1. Fetal surgery for severe CDH
For babies with the most severe cases of CDH, treatment before birth may allow the lungs to grow enough before birth so these children are capable of surviving and thriving. Fetoscopic endoluminal tracheal occlusion (FETO) is a fetal surgery procedure that may improve outcomes in babies with the most severe cases of CDH.

As part of a clinical research study approved by the U.S. Food and Drug Administration (FDA), The Children’s Hospital of Philadelphia is offering FETO as a treatment option to select fetuses with severe CDH. Learn more about what to expect if you and your baby are a candidate for FETO.

After FETO, mothers remain in Philadelphia until planned delivery in the Special Delivery Unit. After your baby is born, she will be stabilized in the Newborn/Infant Intensive Care Unit (N/IICU). Once stabilized, she will undergo the traditional postnatal surgery to repair the hole in her diaphragm.

2. ECMO
After delivery, babies with severely compromised or fragile lungs may require extracorporeal membrane oxygenation (ECMO), a temporary heart-lung bypass technique used to oxygenate the blood and allow the lungs to rest.

Under sterile conditions at the bedside and once your baby has received pain medication, the pediatric surgeon will place two tubes called cannulas into the artery and vein in your baby’s neck.

The tube in the neck takes blood out of the body from the large vein, oxygenates the blood through the ECMO circuit and returns the now oxygenated blood to the baby by the carotid artery.

ECMO is used when other treatments are unsuccessful. The lungs rest as the ECMO circuit does the work. In some cases the baby may have the CDH repair while on ECMO.

ECMO can have serious complications including bleeding and infection. Careful monitoring by an experienced ECMO specialist is critical. At CHOP, one ECMO specialist and an experienced neonatal surgical registered nurse oversee care at all times.

CHOP has been designated a Center of Excellence by the Extracorporeal Life Support Organization since 2008. Our program has done more than 1,000 ECMO treatments since beginning in 1991, with the team providing ECMO support to nearly 150 CDH babies.

3. Postnatal surgery for CDH
Surgical repair of CDH after delivery depends on your baby’s progress in the days following birth, and can occur as early as three days of life. Babies with CDH are extremely sensitive to noise and movement, so surgical repair of CDH is often performed in the N/IICU so your baby does not have to be transported to the operating room.

Your baby will receive general anesthesia and will be continually monitored by a pediatric anesthesiologist. An incision is made just below your baby’s rib cage, the organs in the chest are guided back down into the abdomen and the hole in the diaphragm is sewn closed. The space created in the chest allows the lungs to continue to grow; children will continue to grow more air sacs or alveoli through early childhood.

For babies with large defects or completely lacking a diaphragm, the hole is closed with a GORE-TEX? patch or muscle flap. Sometimes the abdominal wall cannot be closed during surgery. In these cases, temporary placement of a silo, mesh or Vacuum Assisted Closure? (VAC) device may be recommended. As your child grows, the condition of the patch will be regularly monitored by doctors to ensure that it remains intact.