How measles can change a life

Ruediger Schoenbohm

Ruediger Schoenbohm

January 31st, 2013

Ruediger Schoenbohm
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‘A father’s story of pain and loss, and a plea for prevention’

Ruediger2In the early 1990s we lived in Berlin, Germany. We were young and full of plans for the future. My wife Anke was working as a nurse and I had just started my professional career as an engineer. We became a little family when Julian, our older son, was born in the spring of 1992. We built our “nest”, had great friends and neighbours, and simply enjoyed life as a young family.

As most parents probably are, we were very grateful and thankful. Two years later, during the summer of 1994, our second child, Maximilian, saw the light of day and made our family happiness complete. Back then, we had not the slightest idea of how dramatically our lives would change some years later.

Max turned out to be a blessing and a challenge at the same time: he was so full of energy and life that it was sometimes hard to keep him under control. But he was very charming, even as a baby. He won the hearts of the people around him in no time.

Max in 2005

Max_Hockey_2005

When he got sick in the winter of 1994/1995, we were a bit worried because of his young age. After all, he was only six months old when measles hit him badly. It had been way too early for vaccination, but not too early for infection. He spent several days with a high fever while his paediatrician feared that he would develop some sort of complications. And he did: his lungs got affected, he developed a dry cough, and sometimes he even had difficulties breathing. We were concerned, but had no clue and nobody had ever mentioned anything about potentially fatal measles complications.

After a few weeks everything was over. Max had recovered and as spring came around, the vivid, high-energy boy was back. What we did not know back then was that he would only stay with us for another 10 years.

When Max was in third grade of elementary school his performance in math suddenly dropped.

Initially we thought that it might have to do with his high energy level and his difficulty concentrating sometimes. But then he started showing some strange behaviours – only for short moments, but becoming more frequent. We did not realise that these were the first signs…

In October of 2004 the first seizure occurred. Max would stop doing anything – from one second to the other – he would sit and stare. Just for a few seconds or sometimes a minute. When the seizure was over, he could not remember anything. We learned that this kind of seizure is called ‘absence’.

The doctors told us that sometimes children would develop this kind of epilepsy when they were just about to enter puberty. So we thought that maybe it would be temporary and eventually go away. But there was a bad sign: Max’s EEG that was taken shortly after his first seizure was entirely abnormal. There were curve patterns that did not belong there. The doctors tried to control the seizures by a special mix of anticonvulsants. And actually it did help – for a few weeks.

Between December of 2004 and February of 2005 our beloved boy seemed to be back. We thought that finally we had everything under control and that the seizures would eventually go away. We didn’t worry about him not going to school anymore, because he couldn’t keep up with the lessons.

We ignored the fact that he could not remember things that had just happened a few hours before.

We ignored the fact that his behaviour became more…We just didn’t want to realise what was happening.

The seizures came back in March. Heavy, frequent and different. The doctors sent us to one of the best epilepsy centres in Germany at Kehl-Kork. They only needed a few examinations to confirm the worst suspicions: Max was diagnosed with SSPE, Subacute Sclerosing Panencephalitis, a late complication of an early age measles disease. Rare, but fatal – in any case, without exception.

It was very hard for us to realise that they were talking about our bright, happy, vivid 10-year-old boy.

We were numb, desperate, did not understand that the doctors were telling us that we would lose our child – no matter what, just a matter of when.

We fought hard for a long time. We spent nights on the internet seeking for rescue, for some sort of treatment that would stop us from going down the path of the inevitable. We established contacts with medical scientists in India, Turkey and the US. We imported homeopathic medicine from India; we applied ß-interferon, vitamins, fish oil, minerals – all the good stuff.

But fate sometimes is relentless: in April of 2006 our boy said good-bye forever. An unexpected thrust of brain inflammation put him into a vegetative state. Within only hours he lost everything he had learned during his young life. His last words were: “I don’t know who you are”. It’s going to haunt us for the rest of our lives.

The following years were characterised by despair, disbelief, unrealistic hope, and many illusions, by anger, and by a very slow process of realising that he will never come back. But above all, there was and still is the everlasting daily struggle to somehow survive as a family. After all, Max’s brother

Julian had just turned 12 when our family was hit by this tragedy. Didn’t at least he deserve to spend his teenage years in an environment that provided as much normality as possible?

Max in 2012

Max_Wheelchair

Today – at the age of 18 – Maximilian is still with us. His condition has slowly, but steadily worsened over the years. He can no longer sit or hold his head up. After all those years in which he could at least be fed like a baby, his chewing and swallowing capabilities have lately ceased significantly. His body temperature regulation is unstable; he has many seizures, unpredictable, sometimes strong, sometimes barely noticeable. We feed him by a stomach tube and carry him around in his wheel chair. His level of reaction to his environment varies from little to none. When a day is exceptionally good, he would laugh at Mom or Dad, or his brother, or his nurse when they caress him and talk to him.

Max will die. Nobody knows when or how, but it is inevitable. And we have no idea, if and how we as a family are going to survive this… But what drives us crazy is the fact that all of this could have been avoided, had obligatory vaccination protected more children from getting infected by measles and other dangerous “childhood” diseases.

The measles virus is extremely dangerous. Thousands of children around the world suffer from acute complications such as heart problems, deafness, eye infection, meningitis, hepatitis, bronchitis, Krupp cough, and of course the rare ones like infections of the optic nerve or SSPE.

Other severe diseases such as pox, plague, or poliomyelitis are almost eliminated on this planet, because better hygiene and protection by vaccination has successfully pushed back those infections.

So why don’t we learn? Isn’t it a shame for a developed country like Germany that measles are still an issue?

When it comes to vaccination, parents are not responsible for their own children only – their decision pro or against vaccination may have a significant impact on others! There are proven cases of babies being infected by measles while sitting in a pediatrician’s waiting room. Isn’t that cynical? One of these children died a year ago, from SSPE.

Looking back and considering how life could have been is hurtful. Max did not deserve what has happened to him. It is almost unbearable to accept the fact that under different circumstances or if we had lived in another country back at that time our child would most likely still be healthy. We have lost him forever and it is breaking our hearts. Only in our memories we still see him and he makes us smile. Sometimes the thought of him is choking us. We do not know how long Max will still stay with us, but we will care for him until the end.

*Editor’s update: It is with sadness that we report the death of Max in February 2014*

Comments

  1. Gary Finnegan

    Gary Finnegan

    March 21st, 2014

    I’m sorry to report that Max passed away in February 2014.

  2. Mary

    Mary

    April 5th, 2014

    I am so sorry for your loss 🙁 Thank you for sharing your story. I will share with our group and hope that we can prevent another family from having to go through this unfathomable tragedy.

    If anyone is interested in following our Immunization initiative, please join our FB group, it is a place where you can obtain current information on measles, read personal stories of families in need of HERD IMMUNITY, and help us brainstorm ways to underscore the importance of vaccinating their children. You can also follow Riley’s story as it gains momentum throughout the country!
    https://www.facebook.com/groups/429730813797160/

  3. Donna

    Donna

    April 28th, 2014

    My twin brother and I went to play with a friend in 1949. He could not come out to play because he had the measles. We waved to him through the window. Two days later he was dead. My twin brother and I had the measles “shots” at school. Our young friend did not. He died. He was an only child. Of all the kids I went to school with who had the “shots” I do not know of any of them who suffered any side effects. Plenty of people have allergic reactions on this planet from a number of things. We aren’t all the same. There will always be “woulda, coulda, shoulda”. I am glad I had my children vaccinated, and that my grandchildren are also vaccinated. One of them had a bad reaction but is very glad to have had the vaccination regardless. Vaccinations are always improving. It is not a perfect world. I have a brother-in-law and a grandson who cannot take penicillin, a husband and a son who cannot be stung by a bee, or me to overeat foods with niacin. We all suffer the result of such maladies. It is safe therefore to say that some people with vaccinations will suffer from side effects moreso from our own DNA make-up. We all don’t have the same immune systems. So, it seems to me that one vaccine will affect some people, but if it saves the whopping majority , then we are on the right road, instead of an epidemic that would wipe out a whopping majority until such time that various vaccines can be made to treat ALL the immune variations. We have to live with the decisions we make. If you have a few sick in a herd, you separate the sick from the well. Some of the sick will get better with medical treatment and some of the sick will not. Remember, no doctor wants to lose a patient.
    I want to give my best wishes to the man and his wife who have started an association where help can be to others in the same predicaments as he has suffered. In losing their son, they have found the strength to help others. What a testament of love for his son’s memory and to the rest of us.
    It is hard to lose some one you love — at any age. They turned their helplessness into helpfulness.

  4. Keith

    Keith

    May 1st, 2014

    So unfair. RIP Max.

    Make vaccinations mandatory!!!!

  5. T. Ames

    T. Ames

    May 2nd, 2014

    When my boys were young, I took them to a cemetery because I didn’t want them being scared of cemeteries or death. While there, we passed many graves/markers of small children and infants. My boys asked what happened to most of them. I told them because there weren’t the vaccines back then for all the diseases, many people/children passed away from them. I don’t lie to my children, and to this day they remember that visit, and have gotten their children vaccinated. God has allowed us to have the knowledge to learn about diseases and how to avoid them. Why should children and adults become sick or even die for no reasons.

  6. Anonomyous

    Anonomyous

    May 3rd, 2014

    Though I am incredibly sensitive to this family’s story. I think it is important to note that SSPE is also indicated as a potential adverse reaction to the MMR vaccine. This fact is taken directly from Merck (the vaccine manufacturer’s) product circular (page 7). https://www.merck.com/product/usa/pi_circulars/m/mmr_ii/mmr_ii_pi.pdf

    There are rare complications from both the disease and from the vaccine.

  7. Gloria O'Donnell

    Gloria O'Donnell

    May 5th, 2014

    Growing up in a small town gives you a lifetime with the same people. We were all immunized at school in the 50’s. No one i was at school with ever had a reaction to any vaccine. No one became autistic or developed seizures or had any other reaction. All pretty normal grown ups so what does this mean. We were 1)all just lucky, 2)vaccines were better then or is 3)the mess we see today in our health the lifestyle changes that came with television. Our generation was an outdoor generation, playing in the dirt our whole childhood, eating our home grown veggies from the garden and eating meat that was unadulterated with hormones and antibiotic.

    • L

      L

      November 13th, 2016

      There were way less vaccines at that time. The vaccine schedule is now very long.

  8. Rebecca m

    Rebecca m

    January 27th, 2015

    Thank for sharing this and I am very sorry for your loss. My little boy contracted measles from an unvaccinated child at just 3 weeks and sspe will always remain a worry for me. I really don’t understand why people don’t want to eradicate these nasty diseases, let’s face it there are so many other things to be worrying about- why not have the vaccines and have one less worry.

  9. Laura

    Laura

    February 3rd, 2015

    I am so very sorry this has happened to your son. I am living in fear that my son, who 2 years ago contracted measles at 5 months, will suffer this same fate. But my story is unique because my son got measles from a shedder, or recently vaccinated. I know this is rare as well perhaps but maybe not. I know a lot about this disease now, more than I would like but it’s likely a good thing. I know many people (first in my own circle and now far beyond) who have vaccine injured children as we’ll. I know no one who has SSPE until I found this today. I know that my son could not have been vaccinated because of a complication his older sister had with caused her great illness for 3 years. My oldest daughter also suffered brain inflammation and seizures after her 5 year MMR booster. This meant a lot of doctor visits, mri’s and other testing. Luckily she is ok and only suffers occasional mood disorders. It could be worse. As much as I understand your view please understand that the amount of adverse effects from vaccines is greater than the amount of SSPE complications by far. It is important people understand the HONEST risks to both sides. I know this is little comfort to you, or to me even though I disagree with vaccination. Even though in avoiding a reaction, the measles could ultimately cause the worst reaction now. Sometimes, life is what it is and the end is inevitable. I will pray for your family along with my son. Unfortunately illness will always exist.

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