Mothers with Pediatric Palliative Care Teams, "They Opened a Breathing Hole for Us"

Mothers caring for children suffering from rare incurable and severe diseases shared their daily lives and emotions experienced while working with pediatric palliative care teams. In the video of the 9th episode of KBS 'Street Dinner' broadcast on January 11, 2019, the lives of caregivers who stay by their children's side 24 hours a day, providing care no less than professional medical staff, were captured.

"A Daily Life of Staying by Their Side 24 Hours a Day"... The Weight of Mothers Caring for Children with Rare Incurable Diseases

In the video, the mothers were caring for children with different stories. The mother of five-year-old Chae-a, who requires 24-hour oxygen supply and phlegm suction due to lung damage, expressed her desire to dress her child in the most colorful and pretty indoor clothes at home as much as possible. Despite suffering from chronic pain in her shoulders and waist while holding and caring for her 17kg child, the mother said she gains strength from seeing her child feeling refreshed.

The mother of four-year-old Min-jun, who has been sick since birth, also shared her child's daily life. Due to a failed gastric tube surgery, Min-jun must consume food through his nose and requires phlegm suction 20 to 30 times a day. The mother mentioned that she must frequently massage the child because his joints are misaligned, and she also mentioned the process of taking care of herself in preparation for situations where the child enters the intensive care unit. In particular, the story of how she tries to face her child at the hospital looking neat instead of in a tracksuit because she wants to show a tidy appearance when Min-jun opens his eyes in the intensive care unit showed the deep affection of the caregiver.

Honest confessions regarding the psychological pain experienced while facing the child's illness also followed. Min-jun's mother recalled that when she first faced her child's condition, it was hard to find answers because of the thought, "Why is such a child my baby?" Seok-hyeon's mother also revealed that she had a difficult time for 2 to 3 years because she could not accept the child's illness at first.

The caregivers spoke in unison about the 'guilt' they feel while caring for their children. They said the hardest part is being conscious of the eyes of those around them regarding doing other activities while the child is sick, and feeling like they are the last line of defense and cannot break down. One mother added that even in a situation where she has to live less than others because her child is sick, she tries to spend as much joyful time with her child as possible while she can.

The palliative care team plays a role in helping families peacefully let go of their children or maintain their daily lives when the child's condition worsens and reaches the limits of treatment. In the video, the mothers defined the palliative care team as "those who opened a breathing hole for us so we can breathe."

One mother expressed her gratitude by mentioning her experience when the palliative care team visited while the child was in the intensive care unit, reading books to the child and conveying the parents' hearts. It is a confession that the mere fact that medical staff are by their side provides great relief. It showed that palliative care is not simply a process of giving up treatment, but a process that gives the child and the family the strength to live while maintaining dignity until the end.