Riley’s Story
We first found out Riley has CDH (Congenital Diaphragmatic Hernia) at our first ultrasound in July at 20 weeks. We knew there were risks involved when having a baby slightly later in life but thought we had cleared those hurdles. It came as a major shock when the ultrasound tech told us she had my OB doctor on the line and he wanted to discuss something with us. When Riley's diaphragm was developing at about 10 weeks something went goofy and it didn't fully form leaving her with a hole in it. As a result her stomach, spleen, intestines and some of her liver have drifted into her chest cavity. With all these extra organs in her chest it has pushed her heart to the right and is compressing her lungs. The biggest complication is her lungs, especially her left lung not fully developing. CDH can range anywhere from mild to severe. On average about 50% of babies born with CDH survive. In the beginning we were told that Riley was on the severe side and that her only chance of survival was a form of fetal surgery where they go in through my belly and insert a small rice sized balloon into her esophagus which would trap the fluid produced by her lungs and hopefully helping them grow. I made the trip to San Francisco in early September and met with the specialist at UCSF in anticipation of having the surgery. After an in-depth ultrasound we found out that Riley's prognosis, while still serious, wasn't quite as severe as we were originally told and she wasn't a candidate for the surgery. So back home I went to wait out the rest of my pregnancy all the while keeping a close eye on our baby girls progress. While in SFO I was diagnosed with polyhydramnios, a side effect of CDH, meaning I have lots of extra amniotic fluid. This carries it's own set of scary complications including preterm labor and my water breaking, fortunately for me so far it has only meant that I am extremely uncomfortable and have looked full term for weeks. With all the extra fluid in my belly Riley has tons of room to swim around and takes advantage of it. The kids and I get a kick out of watch my belly jump all over the place, although at times it makes me feel like I'm from that movie where the alien pops out of that guys stomach. As of right now the plan is to induce me December 1st in Portland at OHSU. The reason for having her in Portland is because they have the technology and the experience for dealing with CDH. When she's born she will be intubated right away, the goal is not to have her breath on her own until she can be evaluated and the doctors can determine where she stands. Best guess at this point is she has a fully developed right lung and her left lung is at 50%, which is actually pretty good but can no way predict how she will do once she's here. Once she's stable to the doctors satisfaction Riley will have surgery to put all her organs back to where they should be. To say this has been one heck of a roller coaster ride is in no way an understatement. Thankfully Riley hasn't had any other complications and is growing just like she should be. As with anything there is room for lots of complications along the way and the unknown is absolutely terrifying, but our outlook is still positive and with prayer and positive thoughts we will get to bring our baby girl home sooner than later.
