This is the story of my son Mathias, who was just two weeks away from turning 18 when he died in the summer of 2019.
Mathias was a perfectly healthy boy who was almost never ill. A cold, the occasional flu and chickenpox were the most serious illnesses he had experienced during his young life.
He was about to start his final year in the Natural Science programme at Danderyd Upper Secondary School and was very much looking forward to graduating in the summer of 2020. He was also planning to study at KTH Royal Institute of Technology or another good university and was determined to spend at least one semester studying abroad.
Mathias was very active in sports throughout his childhood. He played tennis, floorball and, towards the end, American football with Täby Flyers – where I, as his mother, was also actively involved as a team manager for many years.
So what happened in the summer of 2019?
We were on holiday in Båstad, as we usually are during the summer. Mathias had driven most of the way from Täby to Båstad as part of his driving practice – he had his driving test booked in Halmstad two days after his 18th birthday – and he was so excited to spend time with several of his friends who also usually spend their summers in Båstad.
Looking back, I am so grateful for the time we had together in the car on our way to Båstad. We talked about all sorts of things, laughed and listened to music.
If only I had known what would happen six days later…
It all started with a tick bite on his stomach on a sunny Wednesday morning while we were playing tennis – something we usually do when we are in Båstad. A tick bite is nothing unusual in Sweden during the summer, but Mathias panicked a little and insisted that we go back to the summer house and remove the tick immediately – which we did – before returning to continue playing tennis. However, we contacted an online doctor that afternoon, who told us that we simply needed to keep an eye on it over the next few days.
The following days continued as normal. Mathias practised driving, studied for his driving theory test, relaxed in the sun, played tennis with the rest of the family, worked out at the gym and hung out with – or rather, partied with – his friends in the evenings.
On Sunday morning, he woke up feeling unwell, although he did not have a fever at that point. I brushed it off, thinking it was not particularly surprising since he had been partying for several days in a row. So I sent him back to bed and told him to get some rest in case he was coming down with a cold or the flu.
Later that day, when I checked on him, I could feel that he was getting a little warmer, but not alarmingly so. At around 4 p.m., when I checked on him again, he was warm and worried that it might have something to do with the tick bite he had received on Wednesday. He absolutely wanted to go to a healthcare centre, so I looked up which one nearby was open on a Sunday afternoon – in Ängelholm – and we drove there.
In the car, he complained that he was cold and that he was getting warmer, but to me these were simply normal flu symptoms. At the healthcare centre, he vomited once, mostly water, and complained that his whole body hurt, without mentioning anything specifically about his head or neck. By then, his temperature had risen to 39.9°C, which is high, but not extremely high if you have the flu.
He was examined by a doctor, and his blood pressure, heart rate, oxygen saturation and bacterial infection test – his CRP was 5 according to the medical records from the healthcare centre in Ängelholm – were all completely normal at around 6 p.m. that Sunday.
We were told to go home and treat it as the flu. He should eat ice cream or whatever else he wanted, drink plenty of water, sleep and rest. We were also told that the tick bite was nothing to worry about.
At around 9 p.m. on Sunday, he ate some ice cream, went back to bed and vomited shortly afterwards. None of us thought this was strange, because that can happen when you have the flu – now I know better. I checked on him almost every hour until I went to bed myself and told him to call me at any time during the night if he did not feel well.
He called me twice during the night, at 3 a.m. and 5 a.m., and I went into his bedroom to check on him. He was still warm and did not feel particularly well. I gave him Ipren and Panodil – as the doctor had told us – to bring down his fever, and he went back to sleep.
On Monday morning, I got up at 7 a.m. because I was going to play tennis at 8 a.m., and I checked on him again. He was a little less warm and he was hungry and wanted some ice cream. I told him I would get it for him and went into the kitchen, where he suddenly appeared behind me. He sat down at the kitchen table, ate his ice cream and had something to drink before going back to bed.
At this point, his skin colour was normal. There were no spots or rashes, and he did not complain of neck pain or a headache.
I returned from tennis shortly after 9 a.m. and checked on him as soon as I got home. By then, he was no longer warm as before but was sweating, so I told him to put on some dry clothes while I changed his bed linen. I told my husband that we should probably take him back to the healthcare centre when it opened around noon, after we had played tennis again.
At 11 a.m., my other son, my husband and I left to play tennis, and the last thing I did before we left was check on Mathias. He was sleeping.
At around 11.30 a.m., Mathias’ grandfather saw him and spoke to him in the kitchen while he was eating. Mathias complained that he did not feel well, but nothing more than that. His grandfather remembers that the last time he spoke to him was at around 11.50 a.m.
At 12.08 p.m., we returned from tennis and I went to check on him. He was not in his bed, so I looked around and found him in the bathroom, lying flat on the floor, face down outside the shower. He had obviously tried to take a shower, perhaps because he was sweaty, but we will never know.
At this point, I could see blue spots and a blue-red rash on his body. His lips were blue and he was struggling terribly to breathe. He responded when I spoke to him, but barely. I remember screaming for my husband and my other son to come because something was wrong with Mathias.
We managed to get him up onto the toilet, and while he was sitting there I realised that this was very serious. We had to support his head, his eyes were rolling and he was fighting to breathe.
I told my husband to call 112 because we needed an ambulance there quickly. They told us to put him on the floor in the recovery position, but when we did, he stopped breathing. I started CPR until I managed to get him breathing again. He also had seizures at that point. I have since read the transcript of the 112 call, and looking back, I understand that they realised how serious the situation was.
The first emergency response vehicle arrived about ten minutes later, at around 12.30 p.m., and at that point he was still responding when they spoke to him. They carried him out onto the lawn outside the bathroom to give them more space to work on him.
The other three vehicles, including two ambulances, arrived shortly afterwards. At first he was breathing on his own, but then everything suddenly changed very quickly. He stopped responding, and we could see from the heart monitor that things did not look good – although we did not understand that at the time.
While all of this was happening, I could see a tear running down from his eye, and my younger son heard his last word, which was “Mum”.
At 12.45 p.m. – a time that has been burned into my memory – both my husband and I noticed that his pupils became very large and did not react when the paramedic shone a flashlight into his eyes. We later had it confirmed by the medical staff that this was when his heart stopped. Despite doing everything they could and performing CPR in the ambulance and at the hospital for a total of 45 minutes, they were unfortunately unable to save him.
But we did not know that then.
I remember that suddenly there was a huge amount of activity on the lawn, with CPR, intubation, and then they rushed away with Mathias in one of the ambulances. They told us that one of us should follow in the other ambulance.
We still did not understand how serious it was, so I went to get some clothes for Mathias – he was only wearing his underwear – and a book. I imagined a long wait in the emergency department and wanted something to do.
After we had been driving for a little while in the ambulance – with the blue lights on and at high speed – the ambulance driver asked me whether I had any questions, which I thought was strange. What else could I ask other than, “Is it serious?”
When she then said, “You should probably ask your husband to come,” I began to understand that things were not good.
When we arrived at the emergency department at Halmstad Hospital, I asked if I could see Mathias, but they told me that “they were working on him”. And when I was met by a priest and a doctor, I understood that this was not good.
They took me into a room and began asking me many strange questions, such as whether we had been in Norway or anywhere else abroad, and repeatedly asked me to check how far away my husband was. Much of that time is a blur, but I understood that something was terribly wrong.
When my husband and my other son finally arrived, they were shown into the room where I was sitting, and shortly afterwards two doctors came in. They sat down, looked at us seriously and said, “I am terribly sorry to tell you that we could not save Mathias and he has died.”
My first reaction was, “You’re joking – we’re in a hospital!”
Exactly what was said after that is blurred from my memory, but the doctor said they believed he had contracted something called meningococcal disease and that we, as his family, needed antibiotics – which we were given there and then.
Then we were allowed to go in and see Mathias.
He was lying there on the bed – still warm, but completely still. We understood absolutely nothing. What had happened? We just stood there, completely numb. Did we dare touch him? What do you do when you are standing in a room in an emergency department staring at your own son who is dead?
Everything was completely surreal.
What happened next?
We returned to Båstad and, of course, had to tell our closest family members that Mathias was dead, which were the most difficult phone calls we have ever made.
The hospital had also asked us to find out which people Mathias had been with during the previous ten days, and they would call us the following day to get the list. What a task to be given when you are still in shock.
Looking back, however, we now understand that contact tracing is always carried out when someone develops meningococcal disease so that those other people can also receive antibiotics.
I also began searching online to find out what meningococcal disease was and kept ending up on English-language websites. We felt completely lost and still did not understand anything.
The following day, we posted a message on social media saying that Mathias had died. After that, our phones exploded with calls and messages from people wanting to know what had happened and wanting to support us. There were so many, and to this day we are incredibly grateful to everyone who has been there for us throughout.
But there were also many other difficult phone calls I had to make. I had to call Mathias’ school and speak to his teachers and mentor, cancel his driving theory test and driving test with the Swedish Transport Administration, call Alexander’s school so that he could receive support when he started ninth grade, inform work, and so on.
There were many tears in the days that followed. How I found the strength to get through that first period, I still do not understand.
Then there was the funeral home and planning the funeral of our own son – who is prepared for that?
Should the coffin have a matt or glossy finish? What colour would you like? Which church would you like the funeral to be held in? Have you thought about a priest?
I remember being so angry with the person at the funeral home and shouting, “Who cares – he is dead?”
In the end, it became a beautiful funeral at Danderyd Church, attended by more than 500 people. It was so full that they had to bring in extra chairs, and we had the world’s best priest, Kristin Molander.
But back to what took Mathias’ life.
From being a young, happy, healthy boy, almost 18 years old, who was going to get his driving licence two weeks later and start his final year of upper secondary school, he died less than 24 hours after his first symptom, which was simply feeling unwell.
Mathias’ cause of death was meningococcal bacteria, type W135, as well as sepsis. If someone who contracts meningococcal disease does not receive antibiotics very quickly, there is unfortunately a risk that they will die.
His body fought and fought while the sepsis and bacteria spread through his vital organs until he could no longer fight.
If I had known how ill he was, I would have taken him directly to the emergency department that Sunday instead of the healthcare centre.
But I did not know.
I could not accept that I did not understand what meningococcal disease was, and the more I read about it online, the more frustrated I became.
Why was there not more information about this in Sweden, in Swedish?
And when I discovered that it is possible to vaccinate against meningococcal disease, but that Sweden has chosen not to include these vaccines in the national vaccination programme, I decided that I had to do something.
I decided to start a foundation, first and foremost to spread information about meningococcal bacteria: how the infection spreads, which symptoms to look out for, what to do if you think someone may be affected, the risk groups, the possible after-effects, and the fact that vaccines – MenACWY and MenB – are available against this terrible bacterium that can take a life in less than 24 hours.
And that is what I did.
Meningokockfonden was born in the autumn of 2019.
Our mission is: “To spread information to the public and defeat meningococcal disease and sepsis.”
Our vision is: “A world free from meningococcal disease and sepsis.”
Working with the foundation has been a major part of my own grieving process, not least because it has helped me understand what happened to Mathias and why.
I will never know why. But the knowledge I have gained about meningococcal disease has made this an issue I am deeply passionate about, and I can now share the knowledge I have acquired with others – both locally in Sweden and internationally. Through social media, television, podcasts and numerous newspaper articles.
But sharing Mathias’ story is hard, and even after 7 years, it depends on the day and how much I can cope with. It takes so little for the tears and the pain to return.
In the beginning, there was enormous grief and an incredible physical pain that I had never experienced before, and the tears were never far away, almost all the time.
But thanks to all the people who have stood by my side from the very first day, I still have my head up and my feet on the ground.
The grief has changed over time and become a little less overwhelming, but the sense of missing him has become even greater.
I miss everything that never got to happen, and not being able to see my son grow up and do all the things he dreamed of doing. Seeing Mathias’ friends get their education, travel, move in with partners and so on is painful.
At the same time, I am grateful that I am still allowed to be a small part of their lives and that they come to visit us.
Our lives changed in less than 24 hours. We became a family with one less child alive.
Could our lives have been different today if we had known then everything we know now? And would we have vaccinated Mathias if we had known about the vaccines?
Probably – just to be on the safe side.
If my story about Mathias, meningococcal disease and Meningokockfonden can save just one other person, it will be worth it, even though it will never bring my beloved son Mathias back.
Christine Bennborn
Founder, Meningokockfonden