LaurenPosted: April 3, 2015
Mandy experienced a perfectly healthy pregnancy and easy delivery. She and her husband Keith were thrilled when they brought their second daughter Lauren home to big sister Kara. Their happiness and excitement was short lived though, because just a few days after Lauren came home she began to twitch. At first Mandy and Keith thought these twitches were cute little startle reflexes but it quickly became apparent that something was potentially wrong and Mandy and Keith brought Lauren to the emergency department at Nationwide Children’s Hospital. Lauren was admitted to the intensive care unit with a diagnosis of seizures. Over the next few days all the news Lauren’s parents received was devastating. Lauren had Ohtahara Syndrome, a severe, progressive, and significantly life limiting seizure disorder that in her case was caused by a brain malformation. Mandy and Keith learned that Lauren’s life expectancy was less than two years and that she would most likely require frequent episodes of aggressive medical intervention to actually reach two years.
Watching their tiny daughter in the pediatric intensive care unit, Mandy and Keith knew they did not want Lauren’s short life to be filled with hospitalizations and medical procedures so they lovingly chose to bring her home with the assistance of the Nationwide Children’s Hospital Hospice and Palliative Care team. Lauren lived a very comfortable and content life for 10 months. She was never re-hospitalized nor had any invasive procedures. Mandy shares that when Lauren wasn’t seizing she was smiling and happily engaging with her family and the many friends who visited. She never cried, even when she received her vaccinations! Hospice and Palliative care provided regular nursing and chaplain visits and often accompanied Lauren and her parents to medical visits for additional input and support.
Mandy and Keith are very grateful for the efforts of Hospice and Palliative Care, Complex Care, and Neurology to manage Lauren’s seizures and other symptoms, provide her with a very high quality of life, and a gentle peaceful death at home surrounded by the love and care of her parents and big sister. Lauren’s parents are also immensely grateful for the support that they received from the team for their decision to treat Lauren in a palliative manner. When Lauren was first diagnosed, Mandy found an on-line Ohtahara support site, and here she noticed that the decision she and Keith made was not represented in the stories of the families on the site. Mandy read about children with multiple hospital admissions and many medical procedures. Although she and Keith never wavered in their decision to keep Lauren home and fill her life with love and family, Mandy still craves the support of other parents who have made or are making similar decisions. “At least we got that support from Hospice and Palliative Care, Complex Care and Neurology!” Lauren brought much love and joy to the people who were lucky enough to know her during her short life and she and her family provide an example of the benefits of palliative care in the face of severe and life limiting illnesses.