Oliver’s CDH Story
Oliver was born on March 17, 2021, on St. Patrick’s Day. We nicknamed him our “Little Lucky Charm,” which is exactly what he is. We found out that Oliver was diagnosed with left-sided Congenital Diaphragmatic Hernia (CDH) at my 20-week ultrasound. The doctor took us into a room and told us that he had CDH and that we would be referred to another doctor. She did not really say anything other than that. We left the doctor’s office without knowing what we would have to go through. I immediately began researching, joining groups, and finding all the information I could before my next appointment. In my research, I found all the things that you would find out if you googled statistics of babies born with CDH. I was devastated, to say the least. At the next appointment, the 2nd doctor said that Ollie indeed did have CDH and that he had a 5% chance of survival. Even if he did survive, he probably would not have that great quality of life. He recommended terminating the pregnancy, but I knew that was not an option; I knew that I needed to fight and would fight for my baby and give him every possible chance that I could. We were then transferred to the University of Iowa Hospital, where we met with a team of doctors who took several ultrasounds, talked us through our options, said Ollie had a 30-40% survival rate, and again pushed to terminate the pregnancy. I finally had to say, “this is not an option, do not mention it again.” From that moment, I knew that I had to start my research. I researched for hours the best doctors, hospitals, and organizations.
I was quickly led to Tiny Hero, who helped us gather information, connected me to families also going through this, and helped make other things possible. Through my research, I found that I needed to get to Florida to see Dr. Kays at Johns Hopkins All Children’s Hospital. We traveled to Florida in January, where I did my MRI and had our consultation with the team of doctors. Ollie had his stomach, colon, spleen, and 30-40% of his liver up in his chest, which made him one of the more severe cases. With that information, Dr. Kays gave Oliver a 90-95% survival rate. I knew, at that moment, I needed to make it happen. I knew we had to do whatever needed to be done to have Dr. Kays and his team of doctors deliver and care for Oliver.
I was induced at 4:00 am on March 17, and Ollie made his appearance at 12:35 pm, screaming his little lungs out, which was a little miracle in itself because we were told that he would probably come out quiet. Within minutes, he was intubated and taken to the NICU. Fortunately did not need to be put on ECMO. He had his surgery on day five when they discovered the hole was bigger than they initially thought. Despite that, the surgery went well. From that day, he whizzed through each NICU milestone. He was extubated on March 30, and I held him for the first time on March 31 (Literally the best day of my life.) He came off respiratory support on April 5, when he just was on oxygen support. He then started working on feeding, and he gobbled every last drop up that he could each time. Oliver was discharged on April 16, 2021, spending only 30 days in the hospital. I thank God daily for letting me make the best life decision in fighting for my baby, finding Tiny Hero, and Dr. Kays, who saved my son’s life. Ollie is almost two years old and the happiest, most loving, playful little boy. If you are a parent just finding out or in the thick of it, know that these Tiny Heroes are stronger than you think and will be ready to fight.
