At our 20 week ultrasound appointment Wednesday March 31st 2010 (ironically CDH Awareness Day), Jon and I were thrilled to get the news we were having our second girl but that news was quickly overshadowed by the fact that our baby had a pretty serious complication. We were told that our baby has a left-sided congenital diaphragmatic hernia (this happens in one in about every 2,500 births) which means the diaphragm didn’t close entirely when it was supposed to and some of the lower organs (in our case; stomach, intestines, and spleen) are up where they shouldn’t be. As a result, the lungs don’t grow to normal size. Our inital lung/brain ratio was a 1.0. Which we would later find out with liver down, doesn’t mean much. We were told in 30% of these cases there are additional chromosomal abnormalities accompanying the hernia. They ran Amnio and Fish tests and we were happy to get negative results of no further abnormalities. Given our set of factors, we were told she had a 75-80% chance of survival given Emanuel Children’s Hospital’s experience. A HUGE difference from the initial 40% we were told. I tried to ignore the percentages because each case is so different and I knew Finley was in God’s hands.
We asked for lots of prayers that her lungs would grow large enough and that she would stabilize quickly after birth without too much damage to other organs. God answered all our prayers. She was on Nitric Oxide (8 days), a High Frequency Vent (12 days before surgery and 3 days after surgery), Conventional Vent (5 days + 12 hours), and Sildenafil (33 days). On her 19th day of life, Finley had her surgery (plug repair) and by her fourth day after surgery she was on a High Flow Nasal Cannula!
49 days after her birth, Finley came home.
2 weeks after she came home she started showing symptoms of a Choledochal cyst (acholic stools, palpable mass, jaundice) and after a confirmation from ultrasound on that Friday, she was promptly scheduled for surgery the next Monday. But over the weekend prior to the surgery – her symptoms abated and a follow up ultrasound looked completely different. Her bile was described as “slow moving sludge” so she spent 6 months on bile thinner. The doctors are continuing to follow her since it is unclear if she truly has a cyst, or just a slightly larger than normal common bile duct.
On December 30th, 2010 Finley (4 1/2 months old) had her second CDH repair because she had reherniated – 2 holes. This time she got a gortex patch. We came home after 1 week in the hospital.
Finley likes to keep us on our toes, but I wouldn’t have her any other way.
I am always happy to connect with other families as they begin their CDH journey (or Cholodochal Cyst journey).. please feel free to email me at dooleyliz at gmail dot com.