AMSTERDAM/GORSSEL/GRONINGEN
Hannah’s there is a cold wind on the grave. A lone pheasant bustled behind a grove of urns.
Hannah’s parents, Elisabeth and Mark Bruinjabring fresh roses in a vase.
Even the former ones haven’t exactly withered.
The flames of the twine candles flutter until they reach the safety of the lanterns.
Hannah’s loose grip on life flew away in October 2019. At that time, she was four days less than a year old.
Losing a child is the biggest nightmare for parents. The circumstances of Hannah’s passing made Elisabeth and Mark Bruinja’s nightmare particularly painful.
Hannah suffered from a rare form of epilepsy. One child in two million gets it. Violent epileptic seizures started at the age of a few months.
Hannah’s parents talk about their daughter’s life in the video below:
At Hannah’s grave, they reminisce about how the doctors gave a hopeless prognosis. The disease was incurable. The unbearable pains were constant.
At the worst, Hannah was medicated 14 times a day.
Several operations on the head area did not help. Hannah’s condition got worse after each operation.
– In the end, all the treatments only weakened Hannah, says Elisabeth Bruinja.
Even if the forecast doesn’t promise anything, parents always need hope.
– In the beginning, Hannah looked at us, and there was a connection between us. He cooed softly and smiled in between. The smiles were the first to disappear, Mark Bruinja recalls.
Then the eye contact disappeared.
– We felt like we were going to lose him because we lost touch. At some point you realize that you’re just trying to find a connection, says Mark Bruinja.
The parents realized that medicine could not eliminate Hannah’s pains and severe epileptic seizures. They realized that life had nothing more to offer Hannah.
– We could no longer make Hannah feel better, says Elisabeth Bruinja.
In the end, Elisabeth and Mark Bruinja had to think about the inevitable – ending Hannah’s life. At first they discussed the matter with each other, then with the doctors of the children’s hospital and the ethics committee.
The so-called Groningen Code has been in force in the Netherlands since 2004. It defines the conditions and operating models for how the life of a child under the age of one who is terminally ill and suffering intolerable pain can be actively ended.
Hannah was less than a year old. The other criteria were also met. The parents and treating doctors agreed on these aspects.
Fulfillment of the criteria was confirmed by obtaining a second opinion from other doctors, as required by the code.
The Groningen rules have an additional criterion according to which active termination of life is not accepted if the child can be offered an alternative way to end life.
Doctors finally judged that such a habit exists. As an alternative, they proposed that Hannah be given palliative care, in which the pain and symptoms are alleviated and the feeling calmed down. In addition, tube feeding and hydration are stopped.
Elisabeth and Mark Bruinja couldn’t bring themselves to go and get a new opinion from another hospital, because it would have meant new long examinations for Hannah. They were satisfied with the doctors’ presentation.
In practice, it meant that Hannah starved to death. In the Netherlands, as in many other countries, starvation is considered a natural cause of death.
Elisabeth and Mark Bruinja wished Hannah the shortest possible suffering at the end of her life – a life-respecting way to end unbearable pain.
Their wish did not come true.
– Hannah was ten days without food. He lost weight. We felt that we were starving him, says Elisabeth.
Bruinjie’s home is in a middle-class terraced area on the outskirts of Amsterdam.
There are two lively boys in the family. The six-year-old older brother remembers clips of his sister being in the hospital.
The family has cherished the memories of Hannah and kept them alive. Framed photos of Hannah are on the edge of the fireplace.
After Hannah’s death, it took a while before the couple dared to think about a third child.
The family pit is now two years old. He also knows who is watching from the back.
The Dutch euthanasia law has been in force since 2001. The law applies to people over the age of 12 who have an incurable disease and the resulting unbearable pain. The person himself must be able to express that he wants his life to end.
At the beginning of next year, a new regulation will be introduced in the Netherlands, which will determine the conditions for ending the life of terminally ill children between the ages of 1 and 12 suffering from unbearable pain.
The code therefore covers cases that are not covered by the Groningen code for children under one year of age or the euthanasia law for children over 12 years of age.
Pediatrician from Groningen Eduard Verhagen has done significant work in favor of the new rules. For the Ministry of Health, he first spent four years investigating how children between the ages of 1 and 12 die in the Netherlands. The code was drawn up based on Verhagen’s reports.
In the Netherlands, around 300 children of this age die every year. The death of a child is always abnormal, but according to Verhagen, the vast majority die “well”.
– Then there are a few rare cases where the child’s pain relief cannot be managed in an acceptable way, says Verhagen.
According to him, these children have, among other things, constant epileptic seizures and convulsions, they do not develop, and they cannot be fed properly. Children can have different problems in many different organs.
In his research, Verhagen has interviewed parents of seriously ill children.
– Some of them said that they decided to stop feeding and rehydrating themselves so that the child could get out. They could not accept their child’s suffering.
According to pediatrician Verhagen, these parents have strongly supported the new regulations.
Opponents are also regulated
The new regulation also has its opponents. Many of them feel that the legal protection of doctors is not properly implemented, and that they might be held legally responsible for murder.
According to Verhagen, there is no problem, because according to the regulations, doctors must always ask another doctor’s opinion. In addition, in difficult cases, you must always ask for advice from the country’s best experts.
– There is an expert for every case, assures Eduard Verhagen.
Opponents have also drawn attention to the fact that, according to the regulations, every decision to actively end life must be evaluated afterwards.
Opponents believe that this scares doctors, and they do not dare to make a decision that ends a child’s life, for fear of being charged with murder later.
Eduard Verhagen sees the aftereffect as only necessary to make the process watertight.
How unbearable pain is defined is also subject to criticism.
Verhagen reminds that the regulations only apply to very rare cases, and unbearable pain is always associated with them. Doctors have the ability to recognize the extremity of pain.
– The regulation is not perfect, but it is good enough.
The new rules provide a backbone for reflection on what constitutes a good life for a child who is terminally ill and in unbearable pain, and what a respectful death is like.
Sarike de Zoeten has applied Bram– from the boy’s daycare center. The family’s detached house is in the quiet and close to nature small town of Gorssel.
At home, De Zoeten takes off Bram’s shoes and the braces inside the shoes from Bram, who is sitting in a wheelchair. Beneath them, wobbly ankles that have never been worn are revealed.
Bram is 24 years old. He became ill with severe epilepsy at the age of three months. He’s three months old in a 24-year-old’s body.
De Zoeten opens the safety side of the bed and takes a diaper and clean underwear from the closet, which he puts on the head of the bed to wait. He threads the fabric of the lifting rope under Bram’s butt.
De Zoeten transfers Bram from the wheelchair to the bed with a sling. Bram does not respond to the measures.
In bed, Bram has a few epileptic seizures. Breathing is intense for a moment.
In the next video, Sarike de Zoeten talks about life with Bram.
De Zoeten says that for the first three months they had a good connection with Bram. When the seizures started, everything came crashing down.
– He doesn’t recognize me. When one of us goes into his room, it doesn’t affect him in any way.
De Zoeten is an exceptionally brave person. He doesn’t go around, doesn’t use roundabout expressions. He tells about his own and his family’s experiences directly.
– Whenever Bram was very sick and had a high fever, we asked the doctors to let him go.
De Zoeten recalls how the doctors said that there might be a cure to stop the epilepsy and that “you’re still glad we didn’t let him go.”
The doctors’ interest waned
In the beginning, the doctors were very interested in Bram. They believed they could cure him. At one point, Bram had 12 different medications to control his epilepsy.
Then the doctors’ interest gradually waned.
At the beginning, the doctors estimated that Bram would live to be six years old. Then the estimate increased to ten years. Then up again.
– We have been taking care of the baby for 24 years. I’ll do everything I can to make him feel good.
The life of the whole family has been the same for all the past years, because Bram has defined the lives of others as well.
– Only when Bram finally leaves, we can live a full life. It’s sad to say.
In past years, the attitude of doctors sometimes angered De Zoeten. They could ask how many medicines are at home.
– I answered that a lot. Medicines could kill an entire household. How so?
According to De Zoeten, the doctors’ control included the idea that he might do something to Bram and not follow the law. This made me even more angry.
– I never intended to break the rules.
De Zoeten tells an arresting story.
He took his dog to the vet. This recommended ending the dog’s life because the dog was suffering. At home, despite his pain, the dog was always happy to see Sarike, jumped on his lap and made contact.
– Then I have a son at home who doesn’t know he’s there. He doesn’t know we’re on a bike run. He registered a moment as the wind blew across his face. When the run ends, he has no memory of it.
A loving death and a good life
Like Elisabeth Bruinja, Sarike de Zoeten supports the new regulation, which enables the active life of 1-12-year-olds to be terminated in special cases.
De Zoeten points out that if Bram had been born five years ago, they could have let him go.
– He would have had a loving and peaceful death.
When talking about a loving death, it’s good to think about a good life.
According to De Zoeten, a good life includes connection with other people.
– Learn and be happy. It is life to be able to express yourself and feel alive.
De Zoeten knows that his way of thinking horrifies some.
– I understand that some people think so for religious reasons. I’m not religious myself. I respect those who do not understand my positions. However, I want them to let me live my way.
Home service takes care of Bram’s evening chores three times a week. Tonight it’s the home team’s turn.
Before them, Sarike de Zoeten takes us to the yard for an early summer evening.
On the family’s home street, a club of elementary school children goes out into nature to learn and make observations. The wind blows on the faces of the eager children.
What do you think about euthanasia? You can discuss the topic until Monday 14 August. until 11 p.m.