NewsEmergency in child intensive care: "We have abolished the...

Emergency in child intensive care: "We have abolished the question of meaning"

Created: 07/22/2022, 5:19 p.m

Linienzeichnung auf grünem Hintergrund. Zu sehen ist der Umriss einer Mutter die die Hände ihres Kindes hält.
Consequences of the care shortage: full-time care becomes a family job © iStock / Editing: Saskia Buchen

Parents usually want to take care of their seriously ill children at home – but professional help is hard to come by. Families often have to take care of the care themselves because there is a lack of skilled workers. The state of emergency is greater than in geriatric care

Leon was two and a half years old when he could no longer walk within three weeks and began to crawl again, the first doctor still spoke of “a phase”. Two months later, Leon could only speak eight words. The neurological examinations were already in full swing.

Leon and Luis, both dark blonde, are handsome boys. In the photo that Michaela Schulze shows, ten-year-old Leon hugs his younger brother. The big one laughs heartily, little Luis smiles mischievously. It is a snapshot of the everyday life of a family where there is a lot of laughter. The Schulzes are such a family: Michaela, Georg, Leon and Luis. The boys love Lego bricks and Netflix, their toy cars and each other. But the snapshot, the happy photo, only tells a tiny part of the story from the lives of the four people who live in a small town in Hesse.

The mother Michaela, the father Georg and the two sons should not appear with their real names in this text, because their story is so special that they want to focus on their need but not on themselves.

Leon and Luis, the two laughing brothers in the colorful sweatshirts, are seriously ill. The Schulze’s life shattered into a before and an after when Leon received a terrible diagnosis in early 2015.

It was then that they first heard the word “Leigh’s disease” in a hospital room. Georg and Michaela, who was very pregnant with their second son, found themselves in a parallel world. “We fell into a deep hole, it took six months before we said to ourselves: It has to go on, somehow,” says Michaela Schulze. “How do we do it? Yes, how do we do it? We have abolished the question of meaning.”

When children become terminally ill, parents are often alone in caring for them

Michaela and Georg had never heard of Leigh’s disease before, today everything revolves around the rare disease from which only a few hundred people suffer worldwide. About epilepsy medication and orthopedic posture aids, about surveillance monitors, food weighed to the tenth of a gram and the right oxygen supply in an emergency.

February 2022. Michaela Schulze has freed up an hour for a zoom conversation. Today she has two sick children, because Luis was also diagnosed with Morbus Leigh after about 18 months. Luis had just started to shimmy along the sofa and learn to walk. “We had expected that, but the realization was still bad,” says Michaela Schulze. Luis is today much worse than Leon, he has also developed epilepsy and fights seizures up to 20 times a day. Leon can still crawl forward, Luis always needs a wheelchair.

Leigh’s disease is a hereditary disease that attacks the energy metabolism and is usually not curable, so it is written in dry words on the usual medical websites on the Internet. Life expectancy is only a few years. “Leon will not see a school,” the doctors predicted seven years ago. But Leon is still there and he enjoys going to school. Leigh’s disease often causes symptoms in infancy. It can include muscle weakness, paralysis, seizures, difficulty swallowing, delayed motor development, eye problems and breathing problems – depending on which part of the brain is affected. No child with this disease is like the other. But for all families, the diagnosis is a stroke of fate.

“It is the exception rather than the rule when a family receives regular help from registered nursing staff. The families often compromise and try a lot to keep the staff.”

Bettina Mathes, Vice President of the Hesse Hospice and Palliative Care Association

Leon and Luis actually need professional helpers. However, Michaela and Georg simply cannot find the nurses to whom their family has a legal right. Georg Schulze is a firefighter who works in shifts, he has to support the entire family income on his own. Michaela Schulze, formerly a highly committed assistant to the management of a large company with a 60-hour week, is currently unable to work. Because there are Leon and Luis. Michaela Schulze does things up to 24 hours a day for which people in Germany would actually have to complete medical training for many years. Sometimes she only finds sarcastic words for her situation: “I’ve become a nurse, mother, driver, secretary, participation assistant and so many things. Why do I need my old job back? And what if you get sick yourself, sometimes fail? Then you have to keep going anyway.”

Pediatric critical care services are scarce, but adult caregivers are hard to come by for families like the Schulzes, too, and battles with health insurance companies are only part of the problem. The market is deserted, and geriatric nurses are often not trained to work with children who are ventilated. Some just don’t trust themselves. “Unfortunately, the family is not an isolated case,” says Bettina Mathes, Deputy Chairwoman of the Hesse Hospice and Palliative Care Association, who is in contact with Leon, Luis and their parents, as well as a palliative care team and a specialist medical practice. “It is the exception rather than the rule when a family receives regular help from registered nursing staff. The families often compromise and try a lot to keep the staff.”

Children’s hospice: Support for parents is rare

Leon loves muesli with cocoa. He eats it himself with a spoon, that’s important to him. He doesn’t want to be fed. When Michaela Schulze fills the bowl with the flakes, the first milestone of the day has been reached, at eight in the morning. At this point, the 43-year-old had already completed a morning routine in which every move counts: she helped Leon get up, put the nine-year-old in a wheelchair and washed him. She weighed the ketogenic special food for Luis’ stomach tube down to the tenth of a gram and gave him the medication for the seizures he almost always gets in the morning.

Born healthy, Leon began life like most children. For two and a half years, the Schulzes also dealt with the usual topics from playground conversations, tantrums and chaos in the children’s room. “Then we were catapulted into another universe from one day to the next,” says Michaela Schulze.

When the muesli bowl has been washed, the tightly scheduled daily routine continues, reports Michaela Schulze. “Then it’s time to brush your teeth and get dressed. Leon helps a little within his frame and can actively lift a leg or an arm, which helps us a bit when getting dressed.” Leon is a bit fitter than Luis, so he is not entitled to care – unlike Luis. “We called 16 care services and participation assistance providers, placed ads and started a call on Facebook, but at the moment we really can’t find anyone. Especially no one qualified, no one with training. And since November 2021, due to the new care reform, it has only been allowed to hire skilled workers. That makes the search a lot more difficult.”

Around 50,000 children and young people in Germany are terminally ill. Their number is growing because medical research is improving and the life expectancy of the children affected is constantly increasing. Word has gotten around that there is a nursing shortage in Germany. But when people talk about it, it’s mostly about older people. And then there is the other state of emergency, which is much less well known. It affects seriously ill boys and girls like Luis and Leon and their parents, who despair because they hardly get any support in their need. Fewer and fewer clinics train specialists at all. According to official figures, there were still 10,420 training positions for pediatric nurses in Germany in 2008, and only 8,753 in 2016. Almost every fourth vacant nursing position cannot be filled even now. The supply gap is twice as large as in geriatric care, where the shortage of skilled workers is so loudly lamented.

“Because caring takes so much time and energy, there is little time to just be mom and dad. To cuddle, to play, to comfort, to experience a bit of lightness together.”

Bettina Mathes, Deputy Chairperson of the Hesse Hospice and Palliative Care Association

“We have extreme cases in which families take care of the child themselves, 24 hours a day, seven days a week,” says Bettina Mathes. For the families, this is a threat to their existence, in every respect. “At least one income is lost, often the house has to be converted to make it wheelchair-accessible”. Mothers and fathers like Michaela and Georg Schulze live in permanent exhaustion, being overwhelmed has become part of everyday life. “It’s no longer life, just functioning and surviving,” says Michaela Schulze.

Bettina Mathes knows many stories like hers: “Because caring takes up so much time and energy, there is little time to just be mum and dad. To cuddle, to play, to comfort, to experience a bit of lightness together.” In addition to fear, sadness, pain, worries and the unconditional desire to make the precious time together beautiful, there are also medical tasks, especially for something bigger Physically engage with children.

Almost all children with terminal illnesses are cared for at home for long periods of time. Like Leon and Luis, many of them need help and attention practically around the clock. Actually, the two should also go to school, because there is not only compulsory education, but also a right for every child to attend daycare or school, according to the UN Children’s Rights Charter. “This is extremely important, especially for children with terminal illnesses,” emphasizes Bettina Mathes, “because every day counts for them.”

The care emergency that nobody talks about: intensive care for children

Luis can read something, Leon is cognitively just as fit as other elementary school students. “He likes to be with children,” says Michaela Schulze. Both brothers are currently at home due to corona. “We would also like to send Luis back to school. However, this is not possible without a nurse accompanying the school,” says Michaela Schulze. “He needs constant observation, a caregiver, someone who knows when he’s doing well and when he’s not doing well. There is nobody. I will probably accompany him there myself and be his nurse.”

The Naumann family lives in a southern Hessian village not far from the Schulzes. Parents Sonja and Stefan, 15-year-old daughter Hanna and twins Till and Jakob (both 18) live in an old house that the family has lived in for generations. They are rooted in the place, which is why numerous people are interested in the story of Till, who has been in a vegetative state for five years. A small but serious medical error during a serious spinal surgery in 2017 is to blame for Till suffering severe brain damage and paraplegia. Nothing has been the same since then. The twin brother Jakob is about to graduate from high school, and Till, who used to “chat with everyone”, as Sonja Naumann reports, now needs around-the-clock care. Unlike Leon Schulze, he has an established need for care of 100 percent – which does not mean that this can be covered as a matter of course.

Out of desperation, the Naumanns took a path that is not yet widely known: they use the “personal budget” option. This means that the person to be cared for, in this case Till, acts as an employer and his family chooses those who are to help them themselves and receives money for this directly from the care insurance fund. The Social Security Code has offered this option since 2008, but little is known about it so far. The Naumanns had to gather all the information themselves, with the help of the children’s hospice service and others. “It’s a great relief, but many also shy away from entering into such an employment relationship, away from an organized care service.” The Naumanns issue their own employment contracts, grant holidays and pay social security contributions. In return, they are given the freedom to choose who they want to let close to them. And who doesn’t. And first you have to find the people anyway.

Not only the lack of quantity, but also the quality of their work is often a problem. “We weren’t always satisfied,” says Sonja Naumann. “After all, almost all nights are covered today,” says Sonja Naumann. A personal relationship with a permanent team whose employees also develop a bond with Till and read to him or tell him something that is simply there: that is what the Naumanns want, just like many other affected families. After all, the use of a care service also means a maximum loss of privacy for all family members.

In a new extension in the garden, Till has a spacious room, a large bathroom and a kitchen-cum-living room so that the boy can take part in family life. And there is room for the nurses. The families have to bear most of the costs for such conversions themselves – in addition to the lack of staff, this is one of the most pressing problems in everyday private care.

Nursing shortage: A fulfilling profession must be upgraded

“Of the 230 families we look after, 60 are looking for staff,” says Bettina Mathes from the children’s hospice service. “It’s the exception rather than the rule when everything works well.” “Basically, it’s a very fulfilling job, and large parts of the working hours could be interesting for women returning to work after a long period of family time,” says Bettina Mathes. She is a trained pediatric nurse and mother herself and emphasizes the attractiveness of this professional field. “The close education, the time spent with the patient and the opportunity to observe the development of the accompanying families so directly is a great gift.”

With the Schulze family, the day is slowly coming to an end. Michaela Schulze reports: “We go to bed at 7.45 p.m. Both children are given medication to help them fall asleep and stay asleep. Between 9 p.m. and 10 p.m. there is a quiet time. Quitting time. At 10 p.m. last medication. Julian gets them in his sleep. About his feeding tube. He doesn’t notice. To be on the safe side, he is connected to a vital signs monitor every evening. Another day gone. What luck, Luis only had five seizures today, on bad days it’s sometimes 20.”

Yet. “With us,” she says, “it’s often cheerful. Yes, we like to laugh, everyone who knows us knows that.”

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