Mother doesn't want her son to have radiotherapy after having brain tumour removed.

(186 Posts)
OscarPistoriusBitontheside Fri 07-Dec-12 14:49:11

Can't make the link work but it's on sky news.

Long story short a mother wants to deny her son radiotherapy treatment after his having ha a brain tumour removed because she is worried it will affect his long term health. Doctors have said he had a better chance of survival if he has it. Then estranged (according to the press) father agrees with the doctor.

Personally I think she's crazy. I know two small children who died of brain tumours in the last year and I can only imagine their parents would have given anything to even have had the chance of a discussion about radiotherapy with their doctors.

MrsDeVere Fri 07-Dec-12 21:09:40

This is one of a few situations that no-one should begin to try and judge this woman unless they have a certain amount of experience.

She does not come across as the hippy nutcase that the media are nudgingly trying to portray her as.

She has been terrified by the term a doctor has used and has witnessed her child go through brain surgery.

BTs have a very low cure rate across the board. The treatment is brutal and dangerous.

She is doing what she feels is best for her child. She may not be right but she is not neglectful or crazy.

She loves her boy and she doesn't want to lose him.

I would assume that a court case regarding this treatment would be very different from one regarding a blood transfusion. In the case of a blood transfusion the medics can usually state that it will categorically achieve a cure or prevent death.

This is never the case with cancer treatment.

MrsDeVere Fri 07-Dec-12 21:10:47

And massive hugs to you Edgar x

Skiffen Fri 07-Dec-12 21:11:04

lljkk the Mirror reports his sister is calle Elektra.

I have no idea what I would do in this situation, but I do know I would not run away to an oxygen chamber in Sussex. I would try and maintain a good level of communication with HCPs so that I could understand their recommendations and discuss my concerns. Running away will never help your cause.

OscarPistoriusBitontheside Fri 07-Dec-12 21:19:48

I know I'm judging her based in two shocking cases in my own circle in the last year. It's really coloured my view of what she's done.

The whole story is just desperately sad.

EdgarAllanPond Fri 07-Dec-12 22:00:08

well, just as well the child I had with a brain tumour was the only one with a normal name!

the mother isn't trying to cure him through wacko methods though, she's consented to subjecting him to chemo - that will have consequences for his general health, and for his development.

i can't guess at her logic, not really, but perhaps she has faith that chemo will be enough and doesn't want the added risks of radiotherapy.

she may have a feeling about it that is to do with knowing her son really well - that's one thing no doctor will have on it.

hugs back mdv i don't usually talk about this one, strangely i don't know much still cos i can't google it!

MrsDeVere Fri 07-Dec-12 22:09:04

WTAF is it with MN and fecking kid's names!

We all have to make decisions about our own and our children's health/treatment.
This case is nothing like refusing a blood transfusion.

Accepting cancer treatment is not a simple choice. It often seems that way, particularly right at the very beginning but as things progress it becomes more complex.

Radiotherapy on a young child's brain is not a simple treatment option.

Cancer is fucking wanky toss crap.

Xenia Fri 07-Dec-12 22:24:35

I was the one who mentioned the blood transfusion cases which I suppose are at the easy end of things and helped established the legal principle that a parent cannot in England decide something that might kill a child. The question is in particular cases what goes in which category. If I refused our babies extra vitamins because in my view breastmilk was enough the health visitor tutted but accept the position. Mothers can choose whether to breastfeed or take the probably worse option of bottle feeding. You can smoke at home around your child etc etc....

I had a discussion with a child tonight about medical treatment and suggest his proposed GP visit would be a waste of NHS resources. He made his case and it will be fixed up. Sometimes things are not clear cut.

If allowing chemo but not radiotherapy means death then it is in the blood transfusion cases. If it just means say a difference in outcome of 20% may be a court would let the parents decide (plusral not singular - children have two parents). It would help if the mother had her own medical expert putting her views but I'm not sure she does. Very difficult issues

FlyOverTheMistletoe Fri 07-Dec-12 22:28:38

Whilst people sit and judge - please just listen to MrsDeVere, and other parents who have had to go through - not only a living hell - but then regrets................should I have made my very very very ill child go through more of this ......shit............crap..............pain...............what, why, yep, cancer is a fucking wanky toss crap, and so are other illnesses and conditions. Today I am wearing no judgey pants. As parents - maybe we should all just ........................ <wish I knew the answer>

AmberLeaf Fri 07-Dec-12 22:30:54

Who cares what this womans children are called?! FGS

I can't imagine how she feels and what's going on in her mind as thankfully I have no experience of having a dangerously sick child.

I hope he ok.

MrsDeVere Fri 07-Dec-12 22:31:01

The blood transfusion has been bought up elsewhere and not in the intelligent context you have used Xenia.

People really do seem to think this is a clear and simple case. Give the radio and cure the child, the mother must be nuts to do anything else.

If only, if ONLY that were the case.

ReallyTired Fri 07-Dec-12 22:35:52

It would be interesting to know what Neon wants. Ultimately it is his life that will be affected.

ArthurandGeorge Fri 07-Dec-12 22:40:25

I wonder if both parents have parental responsibility. Usually you only need one person with PR to consent to a treatment to be able to go ahead.

I agree that it isn't as clear cut as a blood transfusion. The media are implying she is saying she would rather take the increased risk of death over risks to his growth (which can be managed with hormone treatment) and IQ and it is this rather than any distress that the treatment might cause him that is stopping her from consenting. If it was the case that the treatment would cause him significant pain and suffering and it was that that she was objecting to then I would have much more sympathy with her. If I was offered the choice of death or the loss of 10 IQ points I would take the loss of IQ.

Xenia Fri 07-Dec-12 22:41:03

I hvae a lot of sympathy for giving parents more rights - they are their children. I'm a libertarian. I want an England where you can home educate or use Eton or the Saudi school in London. I want parents to be able to make choices even of things of which I don't approve so I would side with the mother here.

However the principle is one of the most important parents ever need to consider. The easy cases are if the child will die anyway and X treatment will just make it suffer more then I think most of us would agree the parents should both decide. However if a treatment has an 82% success rate and without it there is a good chance of death which is what I think we were being told in this case that is a very different matter. I think the judge was surprised today that the mother said she would accept chemo though so if chemo can be a massive help even without radiot which may just be a bit of an added extra possible advantage it would seem reasonable to let the parents decided no radiot. It is certainly not wrong it's before a court.

lljkk Sat 08-Dec-12 08:51:05

I like Electra as a name, I went to school with one.
I think the comments re names were very obvious asides.

SantaFrontPaws Sat 08-Dec-12 09:26:53

I agree that a parent (or both) can make and informed choice over treatment for their child.

Sadly, we don't always agree on what is 'good' for a child - preventable deaths from refusal of medication/treatment (so a blood transfusion on religious grounds). Or maybe a mum who is just not in her right mind. This is where the courts do need to step in but it is a minefield in some cases.

Sadly there are also well meaning parents/family who read all sorts of crap on the web and get their hopes us - treatment regimes, diet, dodgy medicine from Mexico (which my brother was prepared to fly to Mexico to buy and smuggle home - no, really) and many other things in varying degrees of quackery.

I like the children's names and I agree that has bugger all relevance to anything.

I understand that that court will br ruling today. I hope that means, whatever the outcome, that Neon is back in his mother's care as soon as possible. I think she's wrong about the treatment for him but nobody surely could doubt her love and care for him or his need of her.

Skiffen Sat 08-Dec-12 09:59:36

I think what is sad, and what is not necessarily clear from some news reports, is that it is disagreement between the parents that have led to legal action.

It must be so stressful to be in this situation and not feel able to come to joint decisions on treatment.

Ps-their names are unusual, they're twins named as a pair and I think comments on their names reflected that. Noting their names are unusual does not negate the sympathy posters feel for their parents.

Skiffen Sat 08-Dec-12 10:01:42

What I throught was really off and lacking relevance in lots of the online media reports is the number of photos of his Mum - clearly personal photos.

giraffesCantFlyLikeReindeer Sat 08-Dec-12 10:42:35

bbc doc on paediatric cancer really worth a watch - very moving and explains some of the very difficult decisions faced.

The treatment is cruel, grueing, and often uncertain. I have whitnessed many children die this year from paediatric cancer. Have leant things about brain tumours and radiotherapy that I had no idea about.

giraffesCantFlyLikeReindeer Sat 08-Dec-12 11:24:41

about 32min in is where the parents and drs are discussingt he long term side effects of radio therapy on their 5yr old dd.

Xenia Sat 08-Dec-12 12:18:25

The point is where does the law intervene and where not. Life and death they will. Issues like should the child have the MMR or not they won't.I don't know why this ie before the court. I don't think it was the father applying. I think it was the NHS trust which wanted to give more treatment than the mother wanted.

hackmum Sat 08-Dec-12 12:42:09

Treatment for cancer is almost always about weighing up a balance of probabilities - often two doctors will disagree about the best treatment. So it's a very sad story. I'm sure the mum has her son's best interests at heart.

PerryCombover Sat 08-Dec-12 12:47:26

I wish them all well and would hope that there is a mechanism the court can use to help them to make a decision rather than force one upon them.

Just heard on the radio that the decision has been postponed because of 'changes in the medical landscape'. No idea what that means. Just hope the lad's condition isn't worse.

MrsDeVere Sat 08-Dec-12 13:15:05

The fact is, he has a brain tumour.

The rates of cure are very low.
The treatment is brutal.
No one can tell her 'if we do this treatment your son will live'
She has been told the side affects and they are many and serious.
She loves her son.

I wish them all that they need to get through this terrible time. I wish him better.

TBH I think that is the only appropriate thing for an outsider to do.

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