CallaPosted: June 29, 2015
Kate and Mike were enjoying a normal pregnancy until at 19 weeks a routine ultrasound revealed enlarged ventricles in their baby’s brain. They were referred to Maternal Fetal Medicine where they learned that their baby’s brain was not developing normally. The severity of the condition and the baby’s ultimate prognosis were unknown, from mildly delayed to possibly still born.
Calla was born at Ohio State University and transferred soon after to Nationwide Children’s Hospital for further assessment. An MRI revealed significant brain abnormalities. Kate and Mike were told that their daughter’s brain apparently stopped developing in the 11th or 12th week of the pregnancy for some unknown reason. They were told Calla would be seriously developmentally delayed, she would likely have feeding difficulties and seizures and that her life expectancy was probably short. Kate and Mike decided that if their daughter’s life was limited they wanted it to be of the highest quality possible. They have chosen not to intervene in aggressive ways to extend her life and instead they asked Calla’s physicians to emphasize keeping Calla home and comfortable.
With these goals established, Calla’s family was referred to the Home Based Palliative Care Team to assist Kate and Mike in caring for Calla at home and to minimalize hospitalizations. Calla is visited regularly by nurses, specially trained physicians coordinate her care, and Kate and Mike are supported by the chaplain and social worker. Recently when Calla’s typically easygoing behavior became very irritable, the team worked with neurology to assess what was causing Calla’s distress. EEG studies showed that Calla’s brain activity was very chaotic. Starting her on some new seizure medications has helped Calla to eat and sleep better and generally to return to her content and happy self.
Kate says she and Mike appreciate the Palliative Care Team most for the 24 access to nurses who know Calla, the guidance and help in medical decision making, and the coordination of medical services. As for Calla, she is home with her mom and dad. She’s been growing and she is generally content and comfortable. She is a little girl who knows a lot of love as she is doted on by her parents and her large extended family.