Piper Grace came into this world on Thursday, April 23, 2020 at 8:29pm. Her story, however, began weeks before that in utero. What appeared to be an uneventful pregnancy, turned out, in retrospect, to be quite different. At 30-31 weeks, I noticed that her movements changed. She was still rolling, but her kicks and punches had almost stopped. My OB was not concerned, because I am not a big person and her heart rate always remained strong.
The birth itself was uneventful but quick (and natural). She came out gasping and struggling to breathe. They whisked her away to try and clear her lungs of fluid, at which point they became aware of her neuromuscular problems. She was immediately intubated and then transferred to Akron Children’s Hospital NICU with my husband, Ryan.
By this point, I had only seen her for about 15 minutes as I still had to check out of labor & delivery and they had to get her off to the appropriate NICU. Fortunately, the wonderful staff at Akron City allowed us to break the COVID rules and let my mom come and stay with me so I was not alone overnight. My mother-in-law, stayed back with Quinn (our 3-year-old daughter). Thank God my unexpected natural delivery made for an easy recovery and I forced a morning discharge so I could finally see my baby.
After days of testing and consults with a team of doctors ranging from Geneticists, Neuromuscular Specialists, and Neonatologists, we received the crushing diagnosis of Spinal Muscular Atrophy (SMA) Type 0, a very rare form of an already very rare genetic disorder. Here is where our journey takes a painful turn. Now we were faced with what choices, if any, there were for a baby diagnosed with a disorder few were familiar with. We were told that nothing would reverse her condition and any hope of her breathing, eating, or even moving (fine or gross movements) was impossible. In the end, she did not qualify for the gene therapy, so our choices took on a different focus. We continued to consult with many specialists, including a leading specialist and researcher in SMA at Nationwide Children’s Hospital in Columbus, Ohio. One of the terms that she used in describing Piper’s condition was that she was “locked in” her body. This resonated with us as we had put a “Piper lock” on the train bridge near our house that our Quinn loved to visit to watch the trains go by. We felt that this was a sign and realized that our only real gift we could give to Piper was to let her use her wings to fly to heaven.
On Wednesday, May 20, 2020 at 4:32pm the NICU staff at Akron Children’s orchestrated our final goodbye. I was able to carry her outside with a ventilator rolling behind me and our incredible NICU and Palliative Care family next to us. Outside in a beautiful courtyard surrounded by blooming hydrangea bushes, we sat with Piper still hooked to her ventilator feeling little raindrops on our cheeks. We felt the moment to remove her ventilator was upon us and just as the clouds parted, her tube was removed and Piper looked calmly into my eyes, free from medical equipment for the first time in her life. As the sun came out and beamed down on her, our sweet Angel took her last breath.
Piper’s life began with a hectic gasp but ended with a peaceful, soft breath. Though she left the physical world, we know she is running free in Heaven with our late dog, Rudy. Piper Grace will forever be missed but we take comfort in knowing she is unlocked from pain and freed by love.