Yes, hospice is sometimes for children too

hospice for baby girl

Lucy is a cute baby girl with loving parents and sisters. For the first eight weeks of her life, she lived in a hospital more than an hour away from her home.

Her family spent as much time with her as possible. Lucy’s mom stayed at the hospital for days at a time, away from her other daughters and husband.

Lucy’s dad needed to work and visited her as often as he could. Her sisters, Layla, 14, and Jenevieve “Jenna,” 2, would visit when possible but mostly stayed with supportive family members.

Lucy wasn’t expected to live past birth; only 10 percent of babies with Lucy’s diagnosis live to be a year old. A concerned physician talked with Lucy’s parents about how difficult it would be to care for her at home, both physically and emotionally.

Physically, she has lots of needs — medical equipment, frequent medications, feedings and oxygen. The physician expressed concern that Lucy’s family, especially her sisters, might struggle emotionally with having her home because they would become attached and Lucy’s life expectancy is short.

Lucy’s parents considered those concerns and concluded that the whole family was already attached to and loved Lucy. This little baby is a big, important part of their family. Mom and Dad decided Lucy and her sisters would all do much better at home where they are surrounded by family and able to spend quality time together.

“I believe in the power of love,” Lucy’s mom said.

The family was told about hospice services and Compassus was blessed to receive a referral to help care for this special baby and her family. We strive to provide quality of life care together, as a team, with Lucy and her family.

Each family and its needs are unique. Hospice can make a positive impact by listening, encouraging family involvement, providing honest answers that help families prepare and advocating for the needs of patients and families. As a hospice social worker, assessing the needs of the family and discussing their goals and hopes helps identify what the family will find helpful and meaningful. It was important for Lucy’s family to be able to create memories with her.

One of Mom’s goals was to have family photos taken. I located a local photographer who was willing to donate her services. Lucy’s mom also expressed she would like to make an ornament for their Christmas tree with Lucy’s fingers as little snowmen, just like Layla and Jenna had made when they were younger.

Other memory-making projects included fingerprint charms, clay impressions of Lucy’s hands and feet, and handprints in paint of the entire family. These are all meaningful keepsakes they will treasure.

Meeting families where they are, mentally, emotionally, spiritually and physically, makes a world of difference during challenging times. What a blessing this sweet baby and her family are to our hospice!

By Jackie Bustemante

Jackie is a social worker/bereavement coordinator for the Compassus team serving Columbia, Jefferson City, Macon and Osage Beach, Mo.