Congenital Diaphragmatic Hernia: My Granddaughter's Experience After Birth

Congenital Diaphragmatic Hernia occurs, according to the statistics, once in every 2500 births. Until we found out during a routine ultrasound during my daughter's pregnancy that this condition was present, we had never heard of CDH. Many parents every day learn that they have to face this with their own babies, and like us, feel uninformed, unprepared, and terrified. I have written a previous article on AC about CDH, and what we have learned of this birth defect. This is the second half of the story, what happened during and after our granddaughter's delivery.

My daughter and son-in-law went for their routine nineteen week ultrasound with one goal in mind, to hopefully find out the sex of their expected baby. Their excitement over finding out they were expecting a daughter quickly turned to terror when the technician said she thought there was a problem. After a second ultrasound at a high risk obstetrician's office, they found out their baby had CDH, or Congenital Diaphragmatic Hernia, which means when the baby's diaphragm was forming, it didn't close completely. We later found out, after delivery, that this had allowed most of her intestines, her stomach, spleen, and a small corner of her liver to move up into the chest cavity and impede her lung development.

We had heard that if the liver "is up," the outcome is worse than with "liver down" because the liver is such a large organ, but later found out this is not a reliable indicator. Nor was head to chest ratio a very reliable indicator. As Elizabeth, founder of the Breath of Hope support group for CDH mothers has repeatedly said, "It's all about lung function." Each baby has to breathe after birth, and how well those little lungs are able to function is really the determining factor in how well the baby will survive. Our granddaughter's liver appeared to be "down" on the subsequent ultrasounds, but we were always told it could move up, or it could be up already because it was just very difficult to say for sure.

Swollen After surgery

Credit: Me

Copyright: Me