Child life specialists help children understand and cope with death

Caroline, 5, a budding artist, decorated a small mailbox for her mother’s room in the intensive care unit (ICU) at Baylor University Medical Center at Dallas. Shannon was struggling to recover from a heart transplant.

Caroline made cards, and watched through the window with Baylor Scott & White child life specialist Mary Catherine Miller, as her father placed them in Shannon’s mailbox. Caroline loved coloring with her mother. Whenever she met with Miller, who helped her understand what was happening to Shannon, Caroline insisted they color together as well.

“Children’s language is ‘play’,” Miller said. “They often communicate more easily and freely when distracted by play.

“We read books with characters experiencing similar circumstances. The stories help them connect with the characters, promote conversation, and validate feelings they may be having.”

Child life specialists with Baylor Scott & White’s supportive and palliative care service, support children of seriously ill adults. While the hospital staff supports the patient, the children are often left wondering what is happening.

Preparing for the Inevitable

The child life specialists work with the adults, helping them understand questions and concerns that children may have when their important person is seriously ill. They offer scripting, giving adults the words to initiate often difficult conversations with their children. They also help them recognize signs of stress in their children. Last year, this program served more than more than 2,120 children in North Texas. The child life program is free to families and funded 100 percent by charitable donations.

Shannon’s condition declined rapidly after nearly two months in the ICU. Caroline arrived at Shannon’s bedside to tell her mother she loved her and to say goodbye. Thirty minutes later, Shannon passed away. Miller, in working closely with Shannon’s husband, had prepared Caroline for the inevitable. She explained that Shannon’s new heart wasn’t working right and the medical team was doing everything they could, but she couldn’t get better.

Miller explained to Caroline that her mother fought hard, but her body was tired and she was going to die. Miller said that this wording is necessary so that children can concretely understand.

“While we want to shelter children, they are very resilient and it is important to be open and honest with them, even in the most difficult circumstances,” Miller said.

Miller prepared Caroline for Shannon’s funeral. A miniature casket served as a prop. Caroline then did what she does best. With Miller’s help, she made paper flowers for the casket and to leave at her mother’s grave.

For more information on child life specialists and palliative care services at Baylor Scott & White Health, visit our website.