“What do you want for Molly's life?” As I sat in the children’s hospital, that question stopped me in my tracks. It led me to consider all of the hopes and dreams of my then seven-year-old daughter, to cherish each moment, and to think about making the most of her life. Just a year and a half earlier we learned she had severe pulmonary hypertension.
Molly faced many obstacles, including cardiac arrest, extracorporeal membrane oxygenation (ECMO), being placed on an artificial lung, and a serious brain injury. It was hard to believe that Molly would not survive. Even after meeting with the palliative care team, where we discussed the reality of Molly’s future, I never gave up hope! When palliative care was mentioned, my mind raced to hospice. I had no idea that the main goal of palliative care is assuring quality of life with a focus on living. The team empowered our family to live as fully and normally as possible, doing things like painting pottery and eating ice cream cones way past bedtime. Meeting with a physician, a nurse, and a social worker provided support to our whole family in many ways. It allowed us to share thoughts and fears, to get answers to questions we didn’t know we had. It also helped us support our other two children through the loss of their sister.
The palliative care team was there for us every step of the way. They assured us that they would do everything they could to assist our family. Members of the team were present at the end of Molly’s life and made sure that she was comfortable. They lifted us up after her passing and stood with us as we learned to pick up the pieces. They were an invaluable part of our health care team, and for that, we are eternally grateful.
We were so profoundly affected by our team that we formed a foundation, in Molly’s memory, to educate others about the benefits of palliative care. It is our hope that families of children living with chronic health conditions will be open to working with a palliative care team. We hope that they not fear it, but embrace it, as they figure out how to live to the fullest despite obstacles along the way.