Cooper Grant Warren was born on October 7, 2009. Within an hour of delivery, he began having seizures. Tests commenced immediately. Neurologists suspected lissencephaly, a congenital neuronal migrational defect, where the surface of the brain is smooth. MRIs confirmed their suspicions. Cooper’s case was severe, as his entire brain was affected. Doctors advised Collin and April that he would suffer intractable seizures, that he would likely never walk, talk, sit up, or smile and that many children with his condition didn’t make it past two years of age. There would be a constant battle with respiratory infections and feeding difficulties. The diagnosis was devastating. Cooper’s life would likely be brief and fraught with suffering.

Collin and April didn’t know exactly how long they would have with Cooper, but they knew that whatever time they had, they wanted to spend it with him at home and not in a hospital. They asked doctors to get him stable enough so he could be discharged. After a total of twelve days in two different NICUs, Cooper was discharged into his parents’ care on hospice.

Cooper was plagued with seizures, often continuously and for hours at a time. Anti-epileptic medications did not control the seizures.

As the Warrens endeavored to care for Cooper, it became evident very quickly that there were inadequate resources to help children in need of palliative care and assist their families. There were no designated physicians or nurses in the hospital who specialized in palliative medicine. Accordingly, there was very little coordination of care for Cooper. There were significant communication issues as a result.

Cooper Warren was diagnosed with Lissencephaly in 2009

Eventually, the hospital found a community hospice provider that was certified to handle pediatric patients and agreed to accept Cooper as a patient, but even they did not have a pediatrician on staff. The hospice nurses were kind and competent, but ill-equipped to handle a pediatric patient who seized for up to twenty hours a day.

The Warrens were grateful they found a neurologist that became a de facto palliative care physician for Cooper, Dr. Melissa Ramocki. Without her, it is unlikely caring for Cooper at home would have been possible. There were phone calls at all hours, constant medication adjustments, and fights with insurance companies over equipment. Every bit of the struggle was worth it, because Cooper was able to be in his own home, surrounded by those who loved him.

Cooper passed away on November 6, 2010. He is deeply missed.

Actually living through Cooper’s illness revealed the glaring deficiencies in pediatric palliative care services in our area. Through that experience, the Warrens were inspired to try to bring about better services to children with life-limiting illnesses and support these programs through the Cooper Warren Pediatric Palliative Care Foundation.