“Hartley had Trisomy 18, a genetic disorder. As soon as we received the diagnosis at the twenty-second week of my pregnancy, Rene Sprague from the Bridge Program was with us and laid out our options. I needed to have a plan because when you are thrown into this, you can’t make logical decisions.
You’re learning all this new stuff. Google isn’t your friend. The first thing you see is ‘incompatible with life.’ So you’re battling that the whole way.
Rene helped create Hartley’s birthing plan, which included the funeral home and the cemetery. We chose comfort care because we were told if Hartley survived, it wouldn’t be for long. We didn’t want her dependent on a tube to breathe or constantly staying in the hospital to be kept alive. We met with our priest to plan for a Mass and baptism. Rene pushed us to do this at our own pace. Having that plan gave us some control of the life we had with Hartley and to enjoy it more. It saved us from stumbling around blind.
Hartley was born on December 30, 2017, with 25 uncles, aunts, cousins, grandparents and friends waiting at the hospital We wanted everyone there because it could be the only time anyone could visit her. If she was born alive, there was a chance she would only live a few hours. Rene was at the delivery, despite walking in pain from the ACL she tore playing flag football in her yard the week before. Hartley wasn’t breathing when she was born, but Rene gave her two quick puffs from the resuscitation bag. We all cried when Hartley took her first breath and started breathing on her own. Our oldest daughter, Harper, was six. We would sneak her in every afternoon after school to have time with her sister.
After we took Hartley home, we took turns staying up with Hartley at night or sleeping. We maybe had two to three hours combined sleep a night, then go to work the next day. Nurses from NICU sometimes stayed with her to give us a little break.
Hartley was so tiny. She looked like a little alien for the longest time. But she grew and maintained her temperature. There were months Hartley went everywhere with us. She went to Mardi Gras, the Alabama Deep Sea Fishing Rodeo, the zoo, and her big sister’s basketball games. Hartley sucked on noses and blew raspberries. That was how she gave kisses. She loved to cuddle. She also learned how to rip out her feeding tube.
Doctors inserted a gastronomy tube to make feeding Hartley easier. The surgery was successful, but her oxygen started falling. The doctors gave us a decision: put Hartley on a ventilator or make her comfortable and love on her because she wouldn’t make it through the night. Hartley went into cardiac arrest during intubation. Rene asked us if we wanted to resuscitate or to just hold her and let her go. We had chosen not to resuscitate and said, ‘Let her go.’ It was the worst thing I have had to say.
Hartley died on February 5, 2019. I wear a necklace with the number 402. That’s how many days Hartley was alive. We found out we were pregnant with Hollis two days before Harley passed away that Saturday. That was very difficult. We were nervous, going into another pregnancy, thinking this could happen again.
Hartley was alive only 402 days. She couldn’t sit up or talk, but she still touched the lives of many people. Hartley made us a better family. We learned how to be better parents and a better husband and wife leaning on each other. We also learned how to be better adults in the real world facing situations that no one understands.”
Reynolds and Lindsey Brabner
Hartley’s story is part of “A Bridge to home, bridge to heaven and bridge to healthy” that ran in Lagniappe two weeks ago. Here is the link to the story: https://lagniappemobile.com/bridge-program-at-usa-childrens-womens-provides-support-to-parents-of-children-who-are-facing-difficult-medical-diagnoses/