Delta's Story - Congenital Diaphragmatic Hernia (CDH)
Ever since I was a little girl, I wanted to be a mom. I carried around baby dolls, and my mom bought me diapers to use on them. Everything was butterflies and rainbows back then. You are never prepared for the "I'm sorry your baby has something wrong with her," especially after having a normal healthy 14-month-old baby boy. But we heard those dreaded words on July 25th, 2016 at our midwife's office appointment. I knew how ultrasounds were supposed to go, having went through our pregnancy with our son. So when the tech got quiet and kept going over baby Delta's heart, I asked "Is there something wrong?" Our hearts sank when she replied, "I’m sorry, there's something wrong with your baby. Her heart isn't where it should be.” They thought she had a CCAM/CPAM on her right lung.
We were sent to a high-risk doctor in Knoxville, TN on July 27th, where we got the devastating diagnosis of RCDH. The hospital in Knoxville wasn’t equipped to handle her care, so we were referred to Vanderbilt Children’s Hospital in Nashville, TN. Completely devastated, we went on Facebook looking for support groups. I found a CCAM support group and was referred to the Breath of Hope group for CDH. While we waited for our consult with Vanderbilt, we heard about Dr. Kays and Tiny Hero. We decided to go to Vanderbilt on August 12th and see what odds they gave us. We were told by the CDH doctor there that she had maybe a 20% chance of survival and advised us to terminate before it was too late legally. Her liver was in her chest, and she had a CCAM on the left side. The odds were stacked against her. Our hearts were broken. It was the longest 3-hour drive home we had ever encountered.
Once home, I reached out to Joy Perkins, and we set up a consult in St Petersburg, Florida for September 13th. This would prove to be the best decision we ever made. Annie and Steve Zolman with Tiny Hero set us up at Staybridge Hotel for a week during our consult. We were so grateful for this as money was very tight. I knew before I ever arrived in Florida that this was where we needed to be. I just felt it in my heart, and my husband agreed. We figured if they couldn’t give us any better of survival rate than Vanderbilt did, then we would just deliver closer to home. Well, Dr. Kays was able to give us a 90% chance of survival but also a 95% chance of ECMO as Delta was very severe. We decided very quickly that we would move to Florida in 4 weeks.
October 18th, we arrived in Florida. Delta was born on November 21st at 2:29pm, went on ECMO at midnight, had her repair surgery on November 22nd at 9am, went off ECMO on November 27th, extubated on December 3rd and went straight to nursing on December 8th. Delta was making strides and was kicking CDH booty. She is our little miracle and a true tiny hero. She went off oxygen on January 2nd and after a few weeks of feeding and weight gain issues she was finally released on January 5th at just 45 days old. At her 1 week follow-up visit, she had gained 7 ounces and was doing amazing. We couldn't be more proud of our baby girl. She is still making strides and already laughing and rolling over. We are forever grateful to Tiny Hero, Joy and Dr. Kays for helping save our daughter's life. She is a happy and active 2-month-old.
