Providing End-of-Life Care for Children


This month, Crescent Cove Mom, Carrie E. and Katie Lindenfelser, Crescent Cove founder and executive director, testified at a Minnesota House Health Finance and Policy hearing to establish medical assistance benefits for pediatric end-of-life care at Crescent Cove. 

Katie shared Crescent Cove’s mission, providing respite and end-of-life care to children with shortened life expectancies, and their families who love them. She described the model of 24/7 care and Crescent Cove is another option, in addition to the hospital and home environment for end-of-life care. 

Carrie has two Crescent Cove children, Milo, who comes for respite care, and Leo, who died peacefully at Crescent Cove this past fall. She also has two children who are typically developing, all of whom she is raising on her own. 

“This past fall, I knew in my heart that Leo's body was tired of fighting,” Carrie testified to the committee. “I made calls to set up hospice for him. I wasn’t sure at this time if I was going to go to Crescent Cove or have him at home. But talking to my older boys it was decided that Crescent Cove would be the best place.” 

“On the next Friday, I got a call from Leo's school. He was having seizures that weren't stopping. I brought him home to provide comfort and care. I called Crescent Cove and they set up hospice for him to arrive that Monday. Crescent Cove allowed me to bring 2 of my other boys and cared for Milo as we lovingly said goodbye to Leo.” 

“We were provided a room to stay in, warm food, quiet time, and most importantly…time with Leo. Crescent Cove cared for Leo so I could just be a mom and love my child on his last days.” 

“On Wednesday, Leo passed away. My boys and I laid there next to him. Crescent Cove provided us comfort and time with him. They took care of Milo and continue to take care of Milo and he loves to be at Crescent Cove where they remember his brother Leo.”

We are grateful to Rep. Liz Reyer of District 52A who is a co-author of this bill in the House. The bill is still in process and will be heard by additional committees of the House and the Senate. If you live in Rep. Reyer’s district, please call or email her office and thank her for advocating for families of medically fragile children. We will keep you updated as this bill continues to move through committee work and comes to a vote.

Photo Descriptions: Top Photo: From L to R: Carrie E., Crescent Cove parent, Donovan of Faegre Drinker, Katie Lindenfelser, Crescent Cove executive director and founder, and Nick Z., who helped us with legislative efforts in 2016 so we could open our home. Carrie's son Milo is in the front of the group.

Bottom photo: Crescent Cove parent Carrie testifying in front of the House Health Finance Policy committee, Rep. Liz Reyer by her side and Milo looking on.