When children die

Christiane Fux studied journalism and psychology in Hamburg. The experienced medical editor has been writing magazine articles, news and factual texts on all conceivable health topics since 2001. In addition to her work for, Christiane Fux is also active in prose. Her first crime novel was published in 2012, and she also writes, designs and publishes her own crime plays.

More posts by Christiane Fux All content is checked by medical journalists.

Children who have only a short time left to live usually want to spend their last days at home. This is often medically possible, but the necessary support is lacking.

When a child dies, the world stands still for the family - be it death due to an accident, illness or childbirth. The German Children's Hospice Association estimates that around 22,000 children in Germany are currently living with a life-threatening condition. Around 5,000 of them die every year according to the Children's Palliative Center in Munich. Leukemia, severe metabolic disorders, heart defects: after such a diagnosis everything turns upside down, nothing is as it was before. Not for the sick children, not for the parents, just as little for siblings and other relatives.

Life in a state of emergency

For months, sometimes even years, life moves between hope and despair. For families, this often means constant commuting between the clinic and home. In addition, everyday life, looking after siblings and one's own job have to be organized. The nervous tension wears down many families because they lead a life in a permanent state of emergency.

"More life in the day"

When all hope of a cure is lost in the course of a life-threatening illness, it is time to rethink. "Change of therapy goal" is what it means in the official jargon. In other words: "It's no longer about giving life more days, but about giving more life to the days," says Dr. Boris Zernikow, head of the Institute for Pediatric Palliative Medicine in Datteln. Often this works best in a familiar environment, which can also be extremely beneficial for parents and children.

Experts are convinced that every bit of normality is good for the children. To be at home again gives them the security and security that they urgently need. Depending on the type and severity of the disease, some children may be better off under the protection of the clinic, because all medical options are available there.

Breaking children's souls

Siblings also benefit when the sick brother or sister comes home. "Many siblings feel unloved because everything revolves around the sick child. At the same time, they feel guilty about their jealousy," reports Dr. Monika Führer, senior physician at the Hauner Children's Hospital in Munich. School failure, bed-wetting and other behavioral problems are alarm signals for a child's soul that breaks.

If the sick child is cared for at home, the siblings are no longer left out. You can participate, take on small love services and give happy moments. Katja Kuhlmann, pediatric nurse of a Munich service for domestic child care, tells in a NetDoctor conversation about a little patient who was particularly dear to her: "When her three-year-old sister came into the room, she always smiled - until the end."

Unimagined resources

However, many parents do not dare to take their sick child home: They are very afraid of doing something wrong. In many cases this concern is unfounded. "With professional help, the parents can usually do this just fine," confirms Kuhlmann. Most of the time, there are many more resources available than one dares hope, even experts believe.

For example, friends who kidnap the sick child's siblings to the zoo in the afternoon. Or the neighbor who mows the lawn so that the parents have more time for their child. The social network can give a lot of strength. That is why people around the affected families can have the courage to overcome their shyness and offer support.

A mother who lost her young son years ago also emphasizes the importance of conversations with friends: "Parents who are alone carry an unimaginable burden," she said at a conference at the University of Munich on the subject of "Pediatric Palliative Medicine". Translated, this means: the medical care of dying children.

Help at home

The Children's Palliative Center at the University of Munich Clinic (KPM) was created from the "Hospice Without Walls" initiative and aims to improve the care of terminally ill children and their families and make it easier for them to step out of the hospital. It is important to close "a gaping gap", warned Beatrice, Princess of Bavaria, the patron of the initiative, which wants to support parents in finding home nursing, outpatient hospice help, psychological carers or simply in the organization of everyday life. The family needs a whole network of helpers. "Parents are overwhelmed by this in this situation," says Monika Führer, who started the project.

Message from the butterflies

Often the children are the first to accept their illness and approaching death. Children know intuitively when to leave. They express this knowledge symbolically, in pictures or poems. Many paint butterflies over and over again - metaphors for the transition into another world. Often they have very specific ideas about death: about angels who eat Nutella, about reuniting with their beloved grandma or about heaven, "where there is ice cream every day," as an eight-year-old leukemia patient knows. What weighs heavily on children is the parents' despair. The children need to know that it is okay for the parents to leave. When saying goodbye, the children often comfort their parents: "I'll sit on the cloud and wave to you."

Orphaned parents

"Orphans" are children who have lost their parents. There is no term in German for fathers and mothers who lose their child. Perhaps because such a loss cannot be put into words at all. "You can't take the pain away from your parents," says Luft. But one can learn to accept death as part of life. Perhaps it helps to know that the child has had the best possible past few days. "The last two weeks with my child," says another mother, "were the best of my life."

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