Once a year, she goes back there, to the damned place along a sloping road in the Belgian village of Eben-Emael, just to the South of Maastricht. It is a kind of annual service for herself. On a day in September in 2006, Nathalie Sieben died here from a bicycle accident, only she forgot to actually die, as she herself describes it. Her life changed completely with one bang.
Until then, things were going well for Sieben, who was 38 at the time. She worked as a clinical pathologist in MUMC+. Her research was going smoothly. She was about to start working for the Vrije Universiteit, the job had the potential of a professorship. Together with her husband and three young children, they were soon to move to Amsterdam.
Until that one car suddenly turned off, without indicating. As was often the case after work, she and her husband jumped on their racing bicycles to do a quick tour of the hills around Maastricht. Except: in their hurry this time they forgot to put on their helmets. The very day that she cycled straight into a car that turned off.
She was in a deep coma for weeks in her own hospital. “I was in bits, had severe brain injury. Afterwards, an intensive care doctor who is also a friend said he had already said his farewell to me. In principle, my condition was too serious to allow transfer to a rehabilitation clinic. Fortunately, one doctor at the clinic saw sufficient room for recovery, otherwise I would probably have ended up in a nursing home.”
Saying goodbye
She had to forget about a career as a doctor. “The rehabilitation process was long and hard. I had to start all over again. Learning how to stand, walk, eat with cutlery.” Fifteen years later, she is still working on “project Nathalie” every day. Things are going a lot better now, although walking is still difficult for her, her short-term memory is not good, and she tires easily.
“Mentally and emotionally, things are also very tough. Both for me and for my family. You have to say goodbye to so many things. My life revolved around my work, and suddenly you have to find other ways to fill your day. Moreover, people no longer look at you as a whole person because of your limitations. On the street, people talk to you like you are mentally retarded. You have to learn to deal with that. You have to learn to love yourself again.”
Stories like Sieben’s still make such an impression on Marcel Ariës, neurologist-intensivist at MUMC+. “The impact of brain injury on the life of a patient and the family is tremendous. Some people lose their entire memory and don’t recognise their partner anymore. Or they have a completely different personality.”
Stupid bad luck
That is why he feels it is so alarming that he is seeing more and more patients like this in the intensive care. “We see an alarming increase in the number of cycling accidents. Last year, there were even more fatal cycling traffic accidents than car traffic accidents.”
This certainly didn’t just concern racing bicycle accidents, Ariës emphasises, but often just every-day, stupid bad luck. “A skirt getting caught in the spokes, two students getting their handlebars locked, someone suddenly opening a car door. We also see more and more accidents with e-bikes. They are often heart-wrenching cases: someone enjoying themselves after recent retirement, or a young woman with children.”
After a bang to the head, the doctor usually has an unpleasant message for the patient’s family: what’s gone is gone. “You cannot repair damaged brain cells, even though other parts of the brain sometimes take over certain functions via a detour. But that is not a guarantee and rehabilitation takes a long time. It is a difficult clinical picture, which is difficult to get a handle on.”
Nineteen-forties
Still, the damage could be limited more by improved treatment techniques. “For instance, the swelling that arises as a result of inflammation reactions because of the power of the impact to the damaged cells,” says Ariës. “The brain cannot expand in the skull. Therefore, the blood supply to the surrounding brain cells becomes restricted, causing them to die too.”
“We would love to measure the swelling and blood supply in the whole brain with the aid of various sensors. With that knowledge, you could subsequently try turning knobs yourself, including a constant adjustment of the blood pressure, allowing all cells to continue receiving oxygen and fuel.”
Except, such techniques are rarely applied. Often, they only use a pressure gauge – inserted through a small hole in the skull – a technique that hasn’t changed much since the nineteen-forties. “After that, it is wait and see, often without any idea about what is going on inside the head and without knowing how we can influence that. The development of treatment techniques has been practically at a standstill for the past 25 years. It is difficult to acquire research grants for this purpose; apparently there is little sense of urgency.”
Message
To put the issue higher up on the agenda, Ariës founded the Hersenstrijd Fonds (Brain Struggle Fund) in 2017. It regularly makes the news, among other things with benefit events. It gets help from ambassadors, such as former professional cyclists Stig Broeckx (who himself suffered a severe brain injury after a serious fall) and Bram Tankink.
Nathalie Sieben is often present as well. “As a pathologist, I hardly ever met patients, but now I do often and gladly,” she says. She does so, for example, as a coach for rehabilitating patients. “But you would prefer to prevent brain damage, so that others don’t have to go through the same as I did. As an ambassador for the fund, I hope to contribute towards greater awareness.”
Prevention is therefore another important aim of Hersenstrijd, for example by promoting the wearing of bicycle helmets. “That reduces the risk of brain injury considerably,” says Ariës. “Particularly now that autumn is here, with dark weather, wet road surfaces, covered in leaves. We want people to continue cycling, because it is good for one’s health. Just wear a helmet, also for commuter traffic on e-bikes. Actually, this message is directed in particular towards that group, because racing cyclists often already wear helmets.”
Compulsory helmets
During an event in 2019, MUMC+ employees were able to buy helmets at a discount, of which by now more than 2,000 have been sold. “We also sounded out the UM, but that didn’t take off,” says Ariës. “The offer is still on the table. We want employees from MUMC+ and the UM together to give a good example. Our region is known for its many cyclists, lets us take the lead when it comes to safety.”
Under the motto ‘Use your head, wear a helmet, (‘Gebruik je kop, zet een helm op’) Ariës recently kicked off a national awareness campaign. He did so as a member of the ‘Doctors for Safe Cycling’ (‘Artsen voor Veilig Fietsen’) thinktank, with doctors from across the country. “We want to give building awareness one more try. If that doesn’t work, we will argue for compulsory helmets for vulnerable groups such as e-bikers, or children. If they grow up wearing a helmet, they will find it normal.”
According to Sieben, the time is already ripe for compulsory helmets. Recently, she had another fall, not wearing a helmet. “It was an innocent ride to the bakery. I skipped up onto the pavement to make a shortcut. Before I knew where I was, I fell flat on my back. If I had landed on my head, I would have had a serious problem. Now I wear a cycling helmet even in the city, but I needed two serious warnings to do so. Without it being compulsory, I don’t see people doing it of their own accord.”
She can’t be bothered about the occasional scornful look at her helmet by cyclists in the city. “I say to them: ‘I have a lot to lose. Don’t you?’”