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. AndreaReuschle

    AndreaReuschle

    January 31st, 2013

    Lieber Rüdiger, Ihr seid so tapfer ! Ich denke an Euch alle !
    Andrea

  2. Shellie

    Shellie

    March 7th, 2013

    Thank you for sharing Max’s story. I was wavering on getting my 9 month old vaccinations this week and now he will definitely be getting them. Thank you for that. My heart goes out to your family & Max. Xo From Canada

  3. Maureen Johnston

    Maureen Johnston

    November 13th, 2013

    Please Please remember that when you make a decision like not having your child vaccinated for what ever reason you as a parent have taken that decision not your child! In this day and age I truly believe that the policy of America should be implemented everywhere. They have too have there children vaccinated for them to be able to attend school. This is not about a parents rights this is a fundamental right to have a child healthy. I also thing that before parents say no they need to look at the implications of that decision film photos etc maybe that might help them! I remember as little girl back in the 60s seeing a friend of mine who had polo, her mum regretted not having her vaccinated and the guilt stayed with her for the rest of her life.

    • DB

      DB

      November 13th, 2013

      A parent can fill out a “conscientious objection” form in the US and still send his or her children to school unvaccinated. We are having outbreaks of diseases that were made rare by vaccination in communities where a large percentage of people are against vaccination. The most recent I heard of was an outbreak of pertussis (whooping cough) in a Texas town where everyone attended the church that thought vaccines were the mark of the devil.

      My heart breaks for the author of this article and his family. This and thousands of other stories like his are why we need to keep vaccinating and keep educating people on the importance of vaccines.

  4. Sarah [NurseLovesFarmer.com]

    Sarah [NurseLovesFarmer.com]

    November 13th, 2013

    I just wrote a blog post on why we should vaccinate our kids especially because the MMR diseases can affect young babies who aren’t old enough to be vaccinating. Thank you for sharing your story, I am sharing it with my readers and I’m praying that people will learn that this is completely preventable.

  5. Willy Smolka

    Willy Smolka

    November 13th, 2013

    Thank you for sharing your story; my heart goes out to you and your family, but I applaud your courage for sharing this with the world. More people need to educate themselves about not only the risk to their child for not vaccinating, but the risk for babies, people with immune deficiencies or receiving cancer treatments that compromise the immune system. It is a very timely story as right now in our province of Alberta, Canada there has been an outbreak of measles brought here courtesy of a young man whose family did not vaccinate him, and who traveled to the Netherlands, where he was exposed to the measles outbreak there (in the so-called Bible Belt). Who knows the untold harm his parents may have done to their community.

  6. Charlene

    Charlene

    November 14th, 2013

    Geting your kids vacinated should. Be law!! Not a decision!!!!! I’m sorry for your loss it makes me so mad when people don’t believe in vaccinations !!!

  7. April

    April

    November 14th, 2013

    Having my son vaccinated had the opposite , I almost lost him because his blood count dropped he is allergic to the vaccine which we didn’t find out till three months later unbeknownst to us his blood count kept dropping to the point where u touched him and he would bruise significantly . The doctors thought we had abused our son when we carried him into the hospital and my hand print was on his back from just carrying him if the nurse hadn’t of came into the room slowly and my son the ball of energy he was had not accidentally bumped his head lightly and the giant bruise that she watched developed in five seconds we would not have our son . The doctors immediately started doing blood work when I told them about his vaccinations a couple months prior, to find out that if we had of took him home he could have rolled over in his crib and not woken up all it would have took is one bump to his head one more time and he would have died . He is 13 now and cannot have the vaccine due to him being allergic to it . The school nurses are not allowed to give him shots I must take him to the hospital so that the right shots are given he is flagged in the health system and by the cdc so that this never happens again .

    But that being said I have five children and only one became sick from that and I am not against vaccination at all and I believe that all kids should get vaccinated. My aunt didn’t get vaccinated in the mid sixties and she almost died from polio . So there are ups and downs but the safest is to get vaccinated !! I truly believe that . I am so sorry about your son ;( xoxox from canada

  8. Ursula

    Ursula

    November 14th, 2013

    I am very sorry about your son, it is a tragedy this happened.

    But to those saying that vaccinations should be law I want to say that unfortunately, first of all the measles vaccine will NOT prevent measles (nearly all the children in measles outbreaks are fully vaccinated), and secondly, many more children end up dying, with seizures, autism and autoimmune illnesses from vaccines than from getting the measles.

    Max’s case is a very rare occurrence. Damage or death from the MMR vaccine is not.

    • Caitlin

      Caitlin

      November 14th, 2013

      As to your first point about vaccines not being a guarantee against the disease, I agree. But even if one does get the disease, it will not be as severe and maybe side effects, such as in the tragic story above, would not occur.
      As to your second point, where on earth are you getting your information? The seizures I could see happening would PERHAPS occur due to fever, but there is no proof for autism and autoimmune disorders with vaccination. And even with the seizures as a potential side effect, re-read the above article! If you don’t get vaccinated and instead get the disease, you have the potential of having seizures anyway, so what exactly are you saving your child from?!

    • TheMom

      TheMom

      November 14th, 2013

      BS. You are not quoting statistics. You are repeating what some TV personality has spouted off. You have your own brain – use it. Do research from reliable sources.

    • sta

      sta

      November 14th, 2013

      Ursula,

      You are WRONG! There is solid research evidence from multiple sources around the world that vaccines DO NOT cause autism. The ONE study that indicated they did was fabricated and the doctor who wrote it no longer has a medical license – which is a blessing. Vaccines save lives. This family experienced an unimaginable due to some other parent’s lack of responsibility. Leave your ridiculous spouting of lies and propaganda somewhere else.

      To Max and his family – I am so sorry for all that you have endured. Thank you for sharing your story. If the one person above who commented that she will now vaccinate her child because of this story – you have made a difference.

    • Anonymous

      Anonymous

      November 14th, 2013

      Where are you getting your information from? Do you live with your head in the sand? Autism…are you seriously still stuck on this suggestion that has been proven to be incorrect multiple times? Look it up and get our facts straight before you spout off complete nonsense.

    • Illryia

      Illryia

      November 16th, 2013

      In New South Wales (Australia) recently we had 69 people identified as having measles. Of those, only 1 was identified as fully vaccinated. I do not believe the claim that most infected children are fully vaccinated as the evidence does not support it.

    • Anonymous

      Anonymous

      November 29th, 2013

      seriously Ursla where are the facts that you are spewing out….you really need more facts…Austism in NOT cause by Vacctions…yes his case might have been rare but Austism…Autoimmunie siezure etc from VAcctions are even rarer…really…

    • Anonymous

      Anonymous

      March 2nd, 2014

      You are a total idiot. It is a proven fact that autoimmune illnesses, autism and seizures are not caused by vaccinations.

    • Tammy Knapp

      Tammy Knapp

      May 3rd, 2014

      I want to start by saying ,” I am not against your view!” What I am against is spread of incorrect information. You are incorrect about “nearly all the children in measles outbreaks are FULLY vaccinated”. Please use facts to back your positions, not more propaganda.

    • Johanna

      Johanna

      May 5th, 2014

      What is your medical background, to make this analysis please? Thanks

    • Anonymous

      Anonymous

      May 6th, 2014

      I agree full heartedly to your post. I myself was vaccinated in the early 80’s for whooping cough and measles and got both at 17 years of age very badly and was sick growing up with many flu bugs, etc. My husband and I chose not to vaccinate our son for many reasons but educated ourselves on both sides before making the decision. Our son has only had one cold that lasted more than 4 days since he was born and he is going to be 3 years old. This is just our testimony of course and losing a child would be unbearable ….but to judge and try to make the parents of unvaccinated people feel somehow responsible is not right…god works in his way and I have to believe with all my heart that what is meant to be shall be no matter what we try and do to fix things….I believe in his works. Lots of love goes out to this family this is so unfortunate.

      • Dr. S

        Dr. S

        December 5th, 2014

        Much like the Tetanus vaccine, the immunogenicity of certain vaccines (acellular pertussis and a rubella for example) wanes with time and that’s why many years after original vaccination you can get infected. We must get boosters for both those infections in out late teens. Immunizations work, but many need periodic read administration to reprime the immune system.

      • Anonymous

        Anonymous

        February 11th, 2015

        You don’t truly believe in his works if you’re afraid of vaccines. Vaccinate your kids so your neighbors are happy, and trust in God’s works, truly believe with all your heart that what is meant to be shall be, no matter what.

      • spinzgirl

        spinzgirl

        February 17th, 2015

        Please don’t consider reading internet blogs as educating yourself. If you want to go to medical school and specialize in infectious diseases and THEN come back and tell us you educated yourself be my guest. But anecdotal evidence is just that. I had multiple vaccines growing up and had no problems. I also have two children who are fully vaccinated who also happen to be high functioning autistic. I know that the vaccines didn’t cause it because medical studies have eliminated vaccines. I also know that my children will live long, healthy lives as a result of my decision as will other children who benefit from my choices. No one, NO ONE, benefits from your choice to not vaccinate your children. Stop being so selfish and think of others when you make your “educated” decisions.

  9. Ria Powney

    Ria Powney

    November 14th, 2013

    I can feel for this family. In 1986 my husband was in contact with the measle virus and ended up at the age of 30 with pan encephalitis . He lived debilitated and suffered for 19 years before his passing. His file showed that he was never vaccinated. Sad as he left 3 children and his wife to watch him suffer. Please get your vaccination!

  10. Laura

    Laura

    November 14th, 2013

    I live in Canada in a large city and we currently have an outbreak of measles ( last I heard 28 confirmed cases) and more to come as more people are having to go into isolation and its spreading from this city into the outlying areas now. I heard on the radio that none of these people have had any vaccinations. Im not sure what the rational is these days for not vaccinating. I have heard everything from goverment conspiracy as a way to “track us” to it all being a hoax. In any case your story is very moving and I hope more people read it and see what can really happen and do what is best for the kids.

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