Willow’s story: how Center for Hospice Care helps parents, families with palliative care for children

Willow’s story: how Center for Hospice Care helps parents, families with palliative care for children
By: Stacey Kellogg Last Updated: December 23, 2019

Editor's Note: The photo above is Gene Donohue, holding his daughter's tiny foot.

Before she was born, Willow Donahue was exceptionally unique. So much more than anyone ever expected. Parents Kristiana and Gene Donahue learned at 20 weeks of Willow’s life that she had genetic abnormalities. The news came when they were at their ultrasound appointment to learn whether their three other children would have a brother or a sister.

“The simplest way I can describe it is that there was some genetic material that detached and reattached somewhere else. It wasn’t like a syndrome, like Down’s Syndrome, but completely unique. They didn’t know how it would affect her when she would be born, but they did give us a poor prognosis,” Kristiana recalled.

Grief is a weird thing. It’s messy. There’s no single way to navigate it. Learning that your baby may not survive sends you into that spiral.

But today, Kristiana can talk about Willow’s story and their journey as a family with confidence and strength, because, she said, she knows God had a plan from the beginning. And because the programs at Center for Hospice Care helped pull them through.

Ironically, Kristiana had accepted a position as the Volunteer Recruitment and Training Coordinator with Center for Hospice Care shortly before learning she was pregnant with Willow.

“I believe in God and that he timed this perfectly for me. This was the exact place I needed to be to get through a journey I had no idea I was going to go through,” she said.

When they learned of Willow’s diagnosis, Kristiana and Gene developed a plan and leaned on the team who provides care through the perinatal palliative care program at Center for Hospice Care.

For the program, a nurse and a counselor team together to provide guidance throughout a difficult pregnancy such as Kristiana’s. They discuss what is important to parents and explore ways to express love and care for their baby. They listen to concerns, questions, and the needs of the whole family. They help parents develop a birth plan and share those specific needs with healthcare providers. The nurse/counselor team is key.

“You’re getting so much difficult information all the time, and it’s draining, so having someone who genuinely cares for you and your child - not just giving you the medical information you need, but telling you, ‘I care about you and your situation right now’ – that’s everything,” Kristiana said.

“The counselors educated me about what to share with the rest of my family,” Kristiana recalled. “Sometimes families don’t want to share how serious things are, but kids want to know, so they helped me share openly and honestly with them, while still making sure that I was sharing only what they needed to know.”

“We have amazing nurses on our Center for Hospice Care team - compassionate, empathetic - they truly care about people,” she added.

Willow was born on Thanksgiving – Nov. 27, 2014. She passed away Feb. 19, 2015. The last week of Willow’s life, the family and Willow received hospice care. Looking back, Kristiana said the 2 ½ months the family spent navigating the news of Willow’s health challenges felt like decades.

“You’re never completely ready for it, but in the same sense, there are definitely things you can do to prepare. Gene and I promised each other at the beginning of our journey that we would push her as much as we could, but that we would listen to the answer she is giving us. Eventually, her little body told us when it was enough,” Kristiana said.

“It’s messy because I felt like I was holding reality in one hand and relentless hope for my baby in another hand. We were walking an emotional tight rope,” she said.

What helped the Donahue family most was accessing the services they needed in time. Center for Hospice Care provides palliative care for children with many different diagnoses. Parents don’t have to choose between receiving palliative care and treatment options for their child. They are able to receive concurrent care, which offers the best of both worlds: hope to receive the treatments they want and palliative care to focus on the comfort and quality of life. You don’t have to wait to seek assistance, it’s better to start early.

In addition to the perinatal and pediatric palliative care programs and hospice services, Center for Hospice Care provides comprehensive grief and bereavement services for both individuals and families. Individual counseling for adults, children, and families; support groups; and the cherished Camp Evergreen for children who have experienced loss are safe, effective places to turn for healing.

Kristiana and Gene have three other children besides Willow: Connor, 17, Carter, 14, and Monique, 14.

“My children attended Camp Evergreen and it was incredible that they were able to share that experience together,” Kristiana said.

Camp Evergreen brings children together who have experienced a loss and provides everything that a traditional summer camp offers with the added benefit of grief counselors and heart-felt programs that help them remember their loved ones and process loss. A luminary program around a planted evergreen is the signature event.

The other thing about grief being messy is that it never goes away for most people. The Donahue family rely on their faith and church community and exceptionally supportive family members for support, but Kristiana said one thing, in particular, has helped her tremendously: keeping Willow’s legacy alive.

“I work in our volunteer department at Center for Hospice Care. One of the big things in my heart was to increase our legacy services. Parents want to know that their child will be remembered,” Kristiana said. “I have so many things that tie me to my daughter today that are healing and wonderful, and I want other people to experience that as well. And sometimes, when families are going through this, they don’t have the time or mental space to know what they will appreciate the most later. I want to be able to say to them: Here are some things that you may want,  precious, wonderful items to cherish forever.   .”

Kristiana holds dear a necklace that has her daughter’s fingerprint on it, and pictures, too.

Kristiana also has worked closely with a team at Center for Hospice Care to help expand the perinatal and pediatric palliative care services.  The program focuses on offering medical, emotional, and spiritual support for the patient and family.

Often, the friends and family of someone who has experienced the loss of a child just don’t know what to say or do, either. Center for Hospice Care’s grief and bereavement programs are for anyone in their nine-county service area regardless of whether they had loved one in their program.

“Everyone processes grief differently, but if I could offer advice for support people, it would be to talk to parents about their child. I love when people text me on Willow’s birthday, or remind me of the impact she had on the world. Sometimes people are afraid to do that, but for me, it’s comforting,” Kristiana said.

When Willow was in care at St. Vincent’s in Indianapolis before her passing, the family was making that trip several times a week to visit and care for her as well. Kristiana recalls the winter weather was a hassle, and even horrible at times. But even that makes the family smile.

“We joke now that when the weather is really bad, it’s Willow Weather.”

Before most families get to the joking stage, they do need help, though, and Kristiana urges everyone to think about getting support even before they think they’ll need it.

Willow trees are known for their strength and flexibility to bend and sway with the wind, storms, and adversity. Though baby Willow’s life was short, she definitely worked through a major storm.

“With everything she did, she brought joy to us, and hers was a life to be treasured and celebrated. With the help of God, family, friends, and Center for Hospice Care, we are able to make that happen,” Kristiana said.

For more information about perinatal palliative care, pediatric palliative care, and the exceptional grief and bereavement programs of Center for Hospice Care, visit them online at https://www.cfhcare.org/. The site contains useful guides, brochures, and program details to get anyone started with help today.