Thursday, 22 August 2013

You're killing my son: mum on the run

An emotive title isn't it? It caught my attention precisely for that reason when mooching through 4od on the iPad.  I enjoy documentaries but I guessed I wasn't going to enjoy this one as much as some and that I may well spend some time 'talking loudly' to the TV when watching it.  Yet, the title intrigued me; after all what mother would risk the health of her child?

The documentary was about a British woman called Sally Roberts who ran away with her son Neon, to prevent him from receiving life-saving treatment for a brain tumour.

Neon, 7 years old, told his mother that his 'his neck went funny.'  He was not able to hold his neck in the forward position and a scan at the hospital revealed a large round brain tumour which appeared to cover a 1/3 of his brain.  It was so aggressive and large the consultants explained it would kill him in weeks without immediate action to remove the brain tumour.  In a 9 hour operation the tumour was removed and it took Neon over 2 weeks just to be able to stand upright.

The hospital consultants recommended immediate radiotherapy and later chemotherapy to kill the remaining cancer cells to prevent it from returning. You would think that the automatic response would be 'How soon can you start treatment?' Instead it appears that the side effects of the first operation scared Sally so much that she did not want to watch her son suffer worse side effects as a result of the radiotherapy and chemotherapy. These included hair loss, deafness and mental impairment.

Sally wanted to look at alternative therapies to avoid the need for radio and chemotherapy and although Ben, her husband, was happy for Sally to do this she became hostile to using conventional medicine and refusing the conventional treatment while she researched alternatives.  Both parents had to consent to the radio and chemotherapy so in the meantime Nein could not have surgery. 

Sally discussed with producers her thoughts on conventional medicine: doctors being heavily brainwashed by a corrupt system where doctors do the best by the pharmaceutical companies rather than by patients. Instead by using the internet she, as a lot of others, have educated themselves to many other alternative options.  

This was the first time that I wondered whether these were the words of a desperate woman or someone brainwashed by alternative therapists. While I think it is more a case of a mother desperate to save her son further suffering I couldn't understand why she didn't agree to try the radiotherapy alongside alternative therapy.  I think I would be throwing whatever I could at my child to save them but, of course, everyone is different.  

Sally's next step was to take Neon to an alternative therapy clinic and ignore all contact from the family.  At this point she hadn't signed consent for radiotherapy so she could have been at home safe in the knowledge that the operation could not take place. Instead she removed Neon from the rest of his family, essentially kidnapping her own son. The police took all decisions out of Ben's hands due to the seriousness of Neon's situation and started a nationwide search for Sally and Neon.

Sally had taken Neon to an alternative therapist called Linda who has hyperbaric chambers (oxygen chambers). Linda believes a number of conditions can be treated completely by using oxygen chambers; Neon used one for 90 minutes a day.  The chambers force oxygen into the blood stream and Linda explained this helps the body to repair itself and improve circulation as well as providing the capacity to help withstand stress thereby improving immune systems.  

I state here that I have not investigated her claims as I can only do that on the internet on which many different claims are made. I would think that conventional medicine would argue that alternative medicine has no effect or at best should be used in conjunction with treatments such as radiotherapy etc. Personally I did not understand what Linda was basing her claims on as official qualifications were not discussed - she could have been using the same websites Sally had been studying on the internet.

I was concerned when Linda stated that using her treatment would prevent a mother, in the future, asking whether she could live with herself when her son who has long term damage as a result of chemotherapy asks "Mummy, why did you do this to me?'  Is it just me or does this sound like emotional blackmail?  What mother, when already in the middle of such a crisis would not feel guilty about that potential future scenario or start to worry once Linda had said that to them?

Linda makes claims as to what she thinks are the causes of cancer in children; the constant use of mobile phones and computers.  She states that in previous years they had a 'children's hour' after which the TV was switched off - she feels there is a correlation in the increase of IT and the number of cancer cases in recent years. She further claimed that sex and violence on TV cause stress, which affects the respiratory system and in turn the immune system, leaving the doors open for cancer to attack. Furthermore, Linda and Sally explained that they did not believe that Neon was sick as he was full of the joys of life and that his strength and happiness improved after leaving hospital.  Well of course!   Clearly he was no longer recovering from such major surgery and pending further treatment he was healthy and feeling much stronger.  

At this point I could not believe that Sally had managed to find someone who sounded completely delusional at worst and at best felt that she could cure cancer by removing what she felt was the cause of the problem.  To say that Sally was willing to clutch at any straw to save her sons life is obvious and whilst this is what I would do it wouldn't be at the detriment of conventional medicine which did have a level of success. 

After 4 days he was found by the police and a further scan showed that in less than 4 weeks the tumour had grown again.  At this point the NHS took the case to court to force agreement of a second operation to remove the tumour. The police put Neon in the care of the father and during visits Sally spent her time arguing with the family about what food he should eat.  She thought nothing of doing this in front of Neon when clearly family arguing is the last thing he needed. 

When asked about a surgery date for the second operation Sally said that it could be 'next week or after Christmas', but doctors were stressing that he needed it within the week. As time marches on the tumour continues to grow.  The NHS took the case to the High Court to remove Sally's right of consent and it was clear that she was now refusing all conventional medicine rather than delaying it.  The judge ruled that the operation was to go ahead immediately. After the decision was passed Sally said that she felt it was a human rights issue as it should be her decision as his mother.  I couldn't help but wondered what happened to Neon's human rights; clearly the High Court were the ones thinking about his rights on her behalf.

Neon was taken into hospital later that night and the second tumour was removed.  As it was smaller he recovered much quicker and had 3 weeks before radiotherapy was due to start.  

Sally returned to court to try and stop the radiotherapy treatment but could not provide evidence to show a suitable alternative to radio and chemotherapy. The High Court ruled in favour of the NHS, the judge telling her that he thought her judgement had gone awry and that while he understood her worry over Neon's quality of life; 'there is no quality of life if one is not alive.' Concerned that Sally would not comply with the decision the judge also ruled that Neon must stay in Ben's care for the foreseeable future.  

Sally responded to negative public comments by attending many media interviews - one comment stood out to me - in a list of her objections and concerns about treatment one was that he could be infertile following treatment and leave her without grandchildren. I sat watching the documentary in disbelief at this point - surely grandchildren would be the last thing on a parent's mind.  

Of course the radiotherapy took its toll; Neon lost weight as his appetite disappeared and his hair fell out. Perhaps one of the worst things for Neon was that his sister went to live with Sally during treatment as he needed so much attention. His father, Ben, did not want his daughter, Electra to miss out on as normal a childhood as possible. 

Following radiation Neon had a short while before chemotherapy was to start and his appetite returned and in turn his weight and energy increased.  A scan showed that he appeared to be cancer free.  The chemotherapy would be aggressive and difficult to get through but would, hopefully, secure his future. At this stage the documentary finished as Neon is still undergoing chemotherapy.  

I enjoy documentaries as I expand my knowledge but some documentaries, such as this, are centred around ethics where many questions are raised. While I enjoy them it causes a lot of emotion which is different in each and every one of us. 

Of course, as Neon's mother Sally is as concerned as her husband and wants her son to live a long and happy life. Her only issue is that she doesn't want to see her son suffer though invasive treatment and recovery again, which would be a given during radiotherapy and chemotherapy. There was also a risk of long term damage. Sally was merely trying to find an alternative to all those issues. She obviously believed alternative medicine was the best option as no mother would willingly but her family through what they have list let alone endure the amount of media and public outcry waged her way. 

Opinions differ and, I am sure, mine will differ from other peoples but personally I would rely on the conventional treatment as I have no proof that alternative medicine has the same success rate of the conventional methods. I may try alternative  therapies at the same time in an attempt to throw everything at the disease.  Either way I, personally, would feel guilty if my child was left with long term damage following conventional treatments but I would rather have that than my child die.

I am of course expressing my opinion from the comfort of my home and my opinion may well be completely different if I had to watch my own child go through such invasive treatments.  

I found the most shocking part of the documentary to be how solidly Sally's beliefs in alternative therapies were ingrained.  Although the programme could only show a small part of Linda's opinions I couldn't help but think that it all sounded very much like brainwashing and when you are at your most vulnerable you are much more likely to believe what you are being told.

This I have some personal knowledge of. I studied with Jehovah's Witnesses before I married my second husband. Being on my own and wanting the best for my daughter, Beautiful B, I was taught and believed a lot of the religions cornerstones of the faith. I also wanted my child to grow up in a community where everyone was loved and where you treated others the way you would wish to be treated yourself. Of course, I started studying when I was very vulnerable and found it easy to accept what I was being told. After 2 years I was baptised and at that point it meant that I would not accept any blood products no matter how serious medical conditions may be. Furthermore, as Beautiful B's mother it was my responsibility to take the same decision for my daughter. That is akin to what Sally is doing - defying conventional medicine.

My decision was religious, Sally's is to ease her son's discomfort, make him well and to secure his future. Without going into detail my decision was to assure Beautiful B's long term future.  Over time though, I began to see the cracks in the beliefs and felt some were in contradiction of what I understood a loving God to be. I also realised that if the worst case scenario had happened I had always known that Beautiful B's dad would consent to conventional medicine so she would get it ultimately. As time went on I realised that I would never have hesitated to sign on the dotted line to agree to medical treatment to keep my child alive. At that point I left the religion.

So what does that have to do with the documentary? In some ways I felt an affinity with Sally as I could relate her story with my time as a Jehovah's Witness. I had defied conventional beliefs and treatment  despite proven results instead trusting in the bible. In the same way Sally was doing the same - she was trusting alternative medicine and turning her back on conventional medicine for the sake of her son's long term future.

I do think that my opinions after watching the documentary are clouded by my time as a Jehovah's Witness because I realised that decisions I make for my mind and body are for me alone. If I want to defy conventional medicine for the sake of a long term future of eternal life then that is all well and good but should I really make such a decision for my child and essentially take her rights away?  Now I don't think so. Having said that Johavahs Witnesses firmly believe that they are helping to secure eternal life for their children. I am not saying that is right or wrong; after all who am I to judge, merely that it is not a decision I could live with. 

Of course, as parents we all make decisions based on our own beliefs, we believe we are not infringing on a child's human rights and if we are then we are doing it for their own good in the long term. Nobody knows whether your child is going to thank you for it in the future. In Sally's case I personally felt that some of her beliefs about alternative medicine were cemented so quickly because she was repeatedly taking in this information during a very vulnerable and stressful part of her life. Of course, I am basing that on an hour long documentary which can only show a very small part of what has occurred. In addition, it is also as a result of my personal feelings some years after leaving the Jehovah's Witnesses. I willingly accepted many things during my studies in the faith that I would never accept today because my life is now completely different.

Decisions affecting children always raise differing and strong opinions. Sally took a lot of criticism for her stance and while it is not a decision I would have made I couldnt help but feel so sorry for the family. There were only one or two moments during the documentary where I felt very strongly and they were mainly aimed at the alternative therapist.  

Ultimately Everyone lost so much; Ben and Sally each lost a spouse, decisions split the family down the middle, both children are experiencing a life with divorced parents at such a stressful time and whichever side (if there is a need to take a side) you fall on all of the family were suffering. After all, severe and life-threatening illnesses are such a strain on a family that is united in the decisions they make, let alone during a situation such as Ben and Sally's.  

I wish this family well and hope that Neon makes a full recovery without long term problems.  

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