Patient Story

Riley Sitkiewiz

Hospice helped Riley and his sister, Kourtney and brother, Chase, to form a special bond.

"The pediatric hospice nurse told me ‘Riley is worth loving.' They talked about him living and participating in life, and helped us achieve our goals."

While pregnant with her third child, Kelly Sitkiewiz found out her baby had a congenital defect that affected his brain and that he would likely be stillborn, or die soon after birth.  There was no cure.  When Riley was born, doctors wanted to whisk him away to perform procedures and tests, but she refused. "I didn't want to do anything unnecessary to him, I just wanted to enjoy every minute I had with him.  I wanted to focus on being a parent."

One of the nurses overheard Kelly and referred the family to a pediatric hospice. "I said I didn't want that, didn't want people to come in and talk about my son dying. I wanted to talk about him living," recalls Kelly. "The nurse said ‘Please, just trust me. These people can help you, they can foster what you want for your son.' "

Riley lived for a little more than a year, and Kelly is forever grateful she listened to the nurse and called the hospice. "Other people told me not to get too attached to Riley because he'll be leaving soon.  But the pediatric hospice nurse told me ‘Riley is worth loving.' They were the first ones to acknowledge my son is a human being. The hospice team came in seeing him as a person. They talked about him living and participating in life, and helped us achieve our goals."

The family met with the nurse and Dr. Jeanne Lewandowski, a hospice doctor. They wanted to learn what Riley was like so they could help Kelly and the family determine what care he needed. They explained their roles and made Kelly feel comfortable.

"Riley had so many issues, no one else could have managed his care other than a palliative care physician," said Kelly. "I'm certain he would have died at four months if Dr. Lewandowski hadn't managed his symptoms."

The hospice team figured out how to help Riley sleep, the best positions for him to eat, how to determine when he was in pain. They helped advocate with the insurance company to extend coverage.

The team helped prepare Kelly, her husband, Alan, and their two other children, Kourtney and Chase, for Riley's eventual death. They did memory-making activities, such as creating three-dimensional handprint molds with the kids, suggested Kelly hire a professional photographer to take pictures of Riley with the family, talked to the kids about their experiences.

When Riley died, the hospice workers helped with funeral planning, brought coloring books for the kids, and even attended the funeral.  They sent birthday and Mother's Day and Father's Day cards after Riley died.

Inspired by her experience and frustrated that so few parents know about hospice, Kelly is now the pediatric team coordinator for Walk With Me, the Detroit-area hospice that provided Riley's care. She speaks to medical and nursing students and hospital workers about palliative care, explaining what it is and why it's important to let patients know about it.

"Only by chance did I get this referral, because it wasn't standard protocol," said Kelly. "I was minutes from discharge, from going it on my own. Thank God the hospice team did what they did. Riley's life was a great experience for our family and I attribute that 100 percent to hospice."

Learn More.  Riley's mom talks about the family's journey.