Celia was Jenni and Andy’s first child. She was born seemingly healthy – her first word was “hi” and she always said it waving exuberantly, with an upstretched arm. She was well beyond her first birthday when her parents began to worry about her development. In hindsight, a few of the things they thought were part of her personality may have been early signs. Sometimes she tilted her head to look at things and instead of wondering whether her vision was impaired, they affectionately called her “Sideways Celia.”
When Celia was about 15 months old, her parents began to feel uneasy . She had a good vocabulary for her age, but as she started to walk, she stopped talking. She didn’t recover her words, and she never learned to walk well. By her 18 month well-visit, they expressed concerns to her pediatrician and got a referral for a developmental evaluation at NCH. Celia underwent an MRI and the results were clear – Celia’s brain was dying. Celia next saw a neurologist and began, as the neurologist called it, “a fishing expedition” of many tests to discover the cause. Finally, the results came back shortly before Celia’s second birthday and the news was devastating. Celia had the infantile version of Neuronal Ceroid Lipofuscinosis, commonly known (although it’s actually NOT commonly known) as Batten Disease. There is no effective treatment and no cure. It is always fatal. Celia’s parents immediately enrolled her in Nationwide Children’s Hospice and Palliative Care program and began to prepare to say goodbye.
Celia needed NCH Hospice and Palliative Care for almost three years. When her symptoms were not under control, hospice nurses visited their home regularly. When she was stable and seemed pain free, they visited less frequently. Celia’s mom Jenni writes, “but they were always, always just a phone call away. They were the good in goodbye. Celia was not able to ride comfortably in a car seat, so Hospice made her life easier by coming to us, and by delivering medications that helped control her seizures. They consulted specialists to avoid unnecessary tests and trips to the hospital. Hospice not only improved the quality of Celia’s limited life, they also made our family’s life and the lives of our extended family, Celia’s circle of caregivers – easier. Hospice staff researched Celia’s rare disease, advocated for our family, supported our decisions and honored our wishes. They were with us while we watched and waited and wept. They helped us plan for life after Celia. They were the good in goodbye.”