"She said her quality of life would not be worth living." -Kennedy's Story
We are Jake and Kelly Alexander of Monroe City, Indiana. Our little girl, Kennedy Grace, was diagnosed with CDH at our 20-week ultrasound by our OB doctor back in 2005. The doctor thought perhaps at first it was just the way the baby was lying. A bit taken aback, we were sent to a maternal-fetal medicine specialist in Evansville. The specialist appeared not to know too much about CDH, as she was reading to us from a big text book. She insisted on an amniocentesis and told us if our baby survived, her quality of life would not be worth living. She referred us to Cincinnati Children's Hospital for a consult for a procedure to be done where they place a balloon in her chest cavity while in utero and would put mom and baby both at risk. At the same time, we were referred to Riley Hospital in Indianapolis to talk to a surgeon. At this point, we were feeling confused and completely hopeless!!! Jake's mom had gotten on the computer one night and googled congenital diaphragmatic hernia when she found Dr. Kays. We kept our appointment in Indianapolis but also set up a visit to see Dr. Kays.
While in Indianapolis, we were met again with people who seemed not to know a lot about the birth defect. During the ultrasound, they couldn't tell us which organs were up in the chest, and our surgeon seemed less than interested. If the baby needed ECMO, she would only get it IF a machine was available. They gave our child a 50% chance of survival.
We packed our bags and headed south a few weeks later to meet Dr. Kays and his team. During our ultrasound with Dr. Richards, he confirmed a left-sided hernia with the stomach, spleen and intestines in the chest cavity. We then met with Dr. Kays who spent 3 hours with us in our consult visit. He gave our baby a better chance of survival.
After many fundraisers and well wishes, we headed to Florida a month before my due date, in case she came early. I had weekly appointments with the OB and was induced at 38 weeks. We ended up having a C-section as Kennedy didn't react to the induction medication well and her heart rate dropped. She was born crying but quickly had to be vented and rushed down the hall to the NICU.
Kennedy's corrective surgery was at 5 days old. There was enough diaphragm left to sew it together instead of using a patch. She did well but struggled with eating and reflux. At one month old, a feeding tube was placed and a Nissen procedure done. We left the NICU and headed home at 2 months old. 7 surgeries later and 11 years old, we are beyond grateful to Dr. Kays and his team!!!