Congenital Diaphragmatic Hernia and the SDU: Ryan Marye’s Story

When Ronni and Chris learned their unborn daughter had a birth defect and would need specialized treatment after birth, they were glad to know they could deliver their baby at The Children's Hospital of Philadelphia. They share their story.

When we first found out our daughter's diagnosis we weren’t aware of the severity of her birth defect. The thought never crossed our mind that we would need to deliver her more than 400 miles away from our home in Fredericksburg, VA.

As we researched congenital diaphragmatic hernia (CDH), we realized quickly that this rare defect requires special care and special doctors. Through extensive Internet searches and advice from local medical specialists, we decided to go for a consultation at the Center for Fetal Diagnosis and Treatment at The Children’s Hospital of Philadelphia.

ryan with brothers We still were not 100 percent sure where we wanted to give birth to our first daughter. Once we met with the nurses, Mark P. Johnson, MD, and Holly L. Hedrick, MD, we knew this was where we needed to be to have our daughter.

The day I went in to the Garbose Family Special Delivery Unit (SDU) I didn’t expect anything more than what I had experienced during my previous three childbirths. I knew things would move fast for the baby and stabilizing her in the delivery unit, but didn’t even consider the amount of support my husband and I would need after her birth. From the moment I stepped into the SDU I was treated with the most excellent care I have ever received in a labor and delivery unit. This is pretty impressive coming from a mother of five!

Our daughter was quickly taken down to the Newborn/Infant Intensive Care Unity (N/IICU) and her status went from stable to critical within the first 36 hours of her life. The nurses in the SDU genuinely cared about her condition as well as making sure we were taken care of.

I remember the night our little girl had to put on ECMO. This was a horrifying experience that no parent ever wants to see their baby go through. Between the nurses in the SDU keeping our mind off what was happening and the N/IICU team assuring us she would be alright, I do not know how the three of us would have had the strength to push through.

All of the CHOP nurses were true blessings sent to our family from up above. We cannot thank them and CHOP's brilliant doctors enough for saving our little girl's life.

Ryan Marye is now four months old. She spent the first 70 days of her life at CHOP and is now home with her four older brothers: Dylan, Owen, Graham and Grayson (as shown adoring her in the picture above). Our family is forever grateful that the Lord put all these wonderful people at CHOP in our lives!"

By Ronni and Chris, April 2012