Our Story
During my pregnancy with our third child, an ultrasound revealed abnormalities. Further testing confirmed that our baby girl had Miller-Dieker Syndrome, a rare and terminal genetic condition with a short life expectancy.
We were devastated. Immediately, the questions started: What does she need? How do we make our time with her meaningful? How do our other two children get the chance to meet and love her?
After careful research, we chose hospice care. We did not want to inflict pain or harm. We wanted her life to be as comfortable and happy as possible.
Piper was born on a rainy January day, full of spunk and personality from the very beginning. She was breathing well and was sent to the NICU for further evaluation. Her first exam gave us real hope. We spent the next 21 days at her bedside, surrounded by the incredible care of the hospital team.
As she grew, we prepared to bring her home and quickly realized we did not have the training or skills to care for her. Her heart had started to fail, and her time with us was getting shorter. We were not medically equipped to take her home, so we learned everything that stood in the way: feeding tubes, oxygen management, temperature and heart monitoring. It was nerve-wracking.
We left the hospital and took her home. It was the scariest day of my life.
Going home meant choosing family, but it also meant we were primarily responsible for her medical care. Piper struggled over the next few days, and we did our best to keep her comfortable and to let her know she was loved.
She passed away at home with us, just six days after we left the hospital.
The days that followed were full of grief: funeral planning, cancelled appointments, wandering through a house filled with equipment she no longer needed.
As we reflected on our journey, we realized how fortunate we were for the care we received and the support of our local in-home hospice team. We also realized our experience was privileged, and that many families do not have the option to bring home a fragile child. For too many, the only choice is to have their child die in a hospital.
