Jeroen Zijp gently squeezes Rebel’s right hand while the adrenaline rushes through his body. There, on a sterile operating table, lies his 14-year-old son. Surrounded by doctors in the Gelre hospital in Apeldoorn who are about to put him under anesthesia. “Now they are going to help you. Just go to sleep, it will be fine ”, Jeroen whispers in Rebel’s ear.
When Jeroen thinks back to that morning of Saturday, October 26, 2019, tears roll down his cheeks again. He leans forward slightly and gasps for air. “I promised it would be okay, but I couldn’t deliver.”
Rebel dies later that day at 10:50 pm in his favorite black and light blue shirt from Ajax. Because of the constipation, which he has suffered from since birth, Rebel is literally and figuratively hidden. Mother Frieda puts the colorful teapot on the table and raises her voice. “Rebel was full of shit, I don’t have other words for it.” His organs, after all the cessation, are completely oppressed. A cascade of serious medical errors precedes his death, but the Guelders firmly denies in the first instance that mistakes were made. The hospital refuses to report Rebel’s death to the Health and Youth Care Inspectorate (IGJ).
No grudge against the doctors
This is the story of parents who stand up for their dead son, fight a hospital, but feel no resentment against the doctors involved. After their fight, rebel parents demand that the hospital always start an investigation in the event of an unexpected death of a child and, in the event of an emergency, report it to the inspectorate. They succeeded: Gelre adapted this procedure after the death of Rebel. “Fighting a hospital and mourning the death of your child at the same time should never happen again,” says Frieda.
Rebel Dean Zijp saw the light of day on July 18, 2005. The cozy townhouse of Jeroen and Frieda on the outskirts of Apeldoorn is full of his photos. Jeroen looks at a photo of Rebel, who looks into the room with his blond curls and innocent green-gray eyes. “So pure and authentic. We miss that every day. ” Frieda nods in agreement. “A happy egg with humor. He got everything out of life. ”
Yet soon after his birth, his parents know that something is wrong. Rebel has a poo problem. Once at primary school, it is difficult for him to keep up with class. He cannot cope with the subject matter well and because of that stress his intestines block. The parents go into hospital with Rebel, leave the hospital. “But I also said: your mother is too fat, your father stutters and you have a poo problem. Nice and important… ”
Everything is fine
After primary school, Rebel will go to practical school in 2018. From then on things get better. Rebel radiates pleasure, plays football at his club SP Teuge and dreams about a life as a rapper or graffiti artist. “In June 2019 we even decided to end the process with the pediatrician,” says Frieda.
There seems to be no cloud in the sky until what Jeroen and Frieda have come to call D-day: June 27, 2019. Jeroen undergoes hip surgery that day, but it goes completely wrong. The doctors touch an artery during the procedure. Frieda: “I saw the fear in Rebel’s eyes: Daddy is not going to die, is he?” Where Jeroen slowly recovers, it goes downhill with Rebel. His intestines are blocking again.
Doctors try to get the intestines going with potions and enemas. It hardly works. “We kept saying: just empty it,” says Jeroen. “The pediatrician thought Rebel could defecate but didn’t want to. He wanted to, it just didn’t work out. If they had operated on him then, Rebel was probably still alive ”, is Jeroen’s firm conviction. On Friday afternoon, October 25, doctors send Rebel home after a day admission. Frieda sobbing: “Looking back, I think: why didn’t I open my mouth anymore, but you put your child in trust with them.”
Feeling helpless
That night it goes wrong. “Rebel had such a pregnant belly”, Frieda portrays. “Then we rushed to the hospital.” The next morning, the attending pediatrician is shocked when she sees Rebel. “She said to me: ‘Frieda, what happened last night, things don’t add up.’ It felt so helpless. ” Hours pass, after which doctors try to ‘clean out’ Rebel later that morning with an operation. It does not work, the doctors of the Gelre can no longer help Rebel. That afternoon he therefore leaves with an ambulance urgently to the Wilhelmina Children’s Hospital (WKZ) in Utrecht.
In the WKZ, doctors try to save Rebel’s life. “But it was already too late, everything was jammed, his organs fell out,” says Jeroen. A little later doctors stopped the treatment, Rebel died that evening at 10:50 pm. “In four months we went from heaven to hell.” His death hit like a bomb; with family, friends, classmates and his football club. At the funeral, where Rebel’s favorite artist Lil ‘Kleine often sounds, Rebel’s pediatrician is present. “The bottom stone has to come up,” Frieda tells her.
Ten days after the death of Rebel, on November 5, ten doctors, care providers and a member of the board of directors of Gelre hospitals meet to evaluate Rebel’s death. There it was decided not to label Rebel’s death as a possible calamity and not to report it to the inspectorate. The Gelre medical specialist patient safety calls a pediatrician from the WKZ in Utrecht, who agrees with the outcome.
Cover up
An extensive interview report with a timeline is made of the evaluation meeting, which the parents receive a month later. “We couldn’t believe what we read there,” says Jeroen. On page twelve of the report, which is in the hands of this newspaper, the hospital concludes: ‘good care was provided from hour to hour’, ‘there was good consultation’ and ‘the quality of care was not at stake’. Frieda starts to shake: “Gelre wanted to cover everything up. Our doctor immediately said: go to the battle. ” Jeroen and Frieda do that. They report their son’s death and the first report to the inspectorate, recording everything they saw shortly before Rebel’s death.
The parents have a ‘follow-up talk’ at the WKZ in Utrecht on 18 December. “We showed all our findings and the interview report, it hit like a bomb,” says Jeroen. A day later, on December 19, Gelre hospitals suddenly reports the incident to the inspectorate. The Apeldoorn hospital says that this has already been decided before the meeting, because the WKZ asked critical questions that they had not asked themselves.
While waiting for further steps, the parents go with a photo of Rebel to all the doctors involved. Jeroen: “We had ten interviews. One broke down in tears, the other fell over. Some doctors said: we thought Rebel was a calamity. ”
Staggering picture
Gelre hospitals decided in consultation with the WKZ to conduct a thorough investigation. To this end, they engage two independent experts after consultation with the parents. A child intensivist from the Amsterdam UMC and a pediatrician and professor from the UMC Groningen. On April 9, this investigation committee came to completely different conclusions.
Trouw gets hold of the non-public investigation report that paints a staggering picture. It states that ‘clear signals that the patient was critically endangered have been insufficiently recognized’ and that ‘the various doctors formed an insufficiently independent and timely judgment, as a result of which wrong choices were made’. Rebel had previously visited the (children’s)In this case, the cooperation between doctors did not go well and supervisors of the resident doctors did not adequately examine him that night. In short: a series of major mistakes were made and the death of Rebel was indeed a calamity that should have been investigated immediately.
Rebel parents see a ray of hope for the first time. “Finally we got everything moving,” says Frieda. “We were so relieved.” In May, the inspectorate will put questions to the board of directors of the Gelre. They want to know why thorough research into Rebel’s death was not immediately conducted. After the answers, the inspectorate decides to conduct its own investigation, something that happened in less than 4 percent of all 881 calamity reports from Dutch hospitals in 2019. The inspection investigation is in the final phase.
Blood money
For the parents, there will be material recognition after the research report. The hospital will pay their 5000 euros, this summer the insurer will pay 35,000 euros. Frieda calls it “blood money,” but they take it. Jeroen ended up in the Wia due to the failed operation, Frieda’s contract was not renewed. “With the money we can continue to live in our house for the time being and we paid for the orange car that we had selected together with Rebel.”
Frieda looks at her steaming cup of tea. “A lot of people don’t like to fight. They know that. We got it done. A consolation is that since the death of Rebel and our struggle in the event of a possible calamity, Gelre always conducts a thorough investigation into the unexpected death of a child. A requirement from us. ” The parents hope for more attention to ‘assassin’ constipation and the functioning between body and mind. “We have something to do on Rebel’s behalf.”
Despite all that has happened, the parents do not hold a grudge against the doctors involved. “That’s because we saw doctors as human beings. They came to our house and sent tickets. We have life sentences, but so are the doctors. Everyone makes mistakes, it’s just how you deal with them. We want to continue to believe in people, no matter how difficult that may be. ”
Professor of patient safety: ‘Always conduct independent research’
Professor of patient safety Jan Klein viewed the interview report and research report on Rebel’s death at the request of Trouw. He argues for always immediately conducting independent investigations in case of possible calamities. “The difference between the reports is caused by the fact that external medical specialists have looked into the matter, which means that there is no longer any question of an ‘unconsciously incompetent’ butcher inspecting his own meat.”
Hospitals are themselves responsible for emergency investigations. Klein: “The hospital often thinks they have an interest if there is as little fuss as possible. One consequence is that there is not much to learn. ”
Edwin Bosch, chairman of the Association of Lawyers for Victims of Personal Injury (ASP), hopes that more independent research will be conducted. “Relatives often have to prove that a mistake has been made. If no independent investigation has been carried out, the next of kin’s lawyer must have an investigation carried out. Because such an investigation is expensive, many relatives cannot obtain their rights. ”
Hearing again
Gelre hospitals says that they are very sorry that the hospital with Rebel’s parents ‘made a wrong start’. “Their grief and their sense of disregard for this has touched us deeply.” The hospital acknowledges that during and after the initial evaluation after Rebel’s death, no appropriate actions were taken. “During the first reporting interview, insufficient critical reflection took place on their own and each other’s actions.”
According to the hospital, the care providers involved were very upset by the death of Rebel at the time of this meeting, as a result of which a proper independent evaluation was not made. “In addition, a clear and plausible answer was given to every question from the emergency committee. This led to the conclusion that, despite the death, there was never a moment that the quality of care was at stake. That later turned out to be an incorrect conclusion. It has not been sufficiently recognized that an investigation was appropriate. ”
The Health and Youth Care Inspectorate does not want to respond during its own investigation.
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