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Hospice for Baby Riley Leads to Memory-Making Activities for the Family

While pregnant with her third child, Kelly found out her baby had a congenital defect that affected his brain, which would likely cause her baby to 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 Kelly 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," she said.

One of the nurses overheard Kelly and referred the family to a pediatric hospice. "I said I didn't want that; I 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.'"

Riley lived more than a year, and Kelly is forever grateful she 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.' The hospice team members were the first ones to acknowledge my son was a human being. The 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 a hospice doctor. The nurse and doctor wanted to learn what Riley was like so they could help Kelly and family to determine what care he needed. They explained their roles and made Kelly feel comfortable.

"Riley had so many issues that no one else could have managed his care other than a palliative care physician," said Kelly. "I'm certain he would have died at 4 months if the hospice doctor hadn't managed his symptoms."

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

"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."

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; and 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, 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 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 doing 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% to hospice."

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