Today we met with a pediatric surgeon to discuss what we can expect if our daughter survives the birth. Although he hadn't yet talked to the doctor who diagnosed the CDH, he was much more optimistic about our daughter's chances for survival and long-term health. He explained that the St. Lukes - Boise center sees about 3-4 cases on average per year with an overall success rate around 80%. Even the babies labeled as severe have had a good response here. We were even able to meet a baby boy who recently overcame CDH and was in the office for a check-up. Other than the small incision under his left ribs, he looked like a normal, healthy baby. Judy and I left feeling more confident about our daughter's chances.
The surgeon said that he will call the doctor that we met with last week to find out why the prognosis he gave was so bad. We are anxiously awaiting his call.
In November 2007, our unborn daughter was found to have a condition called Congenital Diaphragmatic Hernia (CDH), which occurs in 1 out of every 2,500 pregnancies. Basically, our daughter’s diaphragm had a hole in it that had allowed her stomach, liver, and some intestines to pass into the upper regions of her chest cavity. Her chest was too overcrowded to allow her lungs to fully develop. She was given slim odds to survive and worse odds to thrive.
Our daughter, Jillian Olivia, was born in the Spring of 2008. Since her birth, Jill had two surgeries during her first year and has since thrived.
We started this site to chronicle our experiences throughout this journey and to keep our family members and friends up-to-date on Jill's condition. Now we use this site to update others on what's going on in our lives.
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