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Saviour sibling first for Britain

Fergus Walsh | 19:55 UK time, Tuesday, 21 December 2010

If you want a story of good cheer in the run-up to Christmas, then have a look at that concerning Max and Megan Matthews.


Max is a so-called "saviour sibling" who donated tissue which successfully treated his sister - it is the first time the entire process has been done in Britain. Previous cases - like that involving Charlie Whitaker - followed tissue typing in the United States (see my postscript below).


She was born with a rare inherited condition Fanconi Anaemia. Her body produced no blood cells so she needed transfusions to stay alive (another reason to become a donor - see my previous post). In and out of hospital with infections, it was a tough existence. But Megan is one of the most cheerful and uncomplaining nine year olds I have had the pleasure to meet.

The Matthews live in King's Lynn and Megan gets a lot of her treatment at Addenbrookes Hospital in Cambridge. When she began to exhibit signs of bone marrow failure, the hospital did a worldwide search for a donor, but none could be found.

Megan's parents wanted another baby - they also have an eleven year old son Stuart - but natural conception would have placed them at risk of having another child with Megan's condition. There would also be only a one in four chance of it being a tissue match.

By opting for IVF and Pre-Implantation Genetic Diagnosis they were able to select an embryo that was free of Fanconi Anaemia AND whose cells were able to cure his sister's bone marrow failure.

The IVF and tissue typing was done at Care Fertility in Nottingham, while the transplant took place at the Bristol Royal Hospital for Sick Children. The entire treatment was NHS funded.

The HFEA has granted more than twenty licences for saviour sibling treatment in the UK in recent years, but this is the first time that it has been successful here.

Max's umbilical cord was preserved at birth but not enough tissue was recovered, so he needed an invasive procedure to recover bone marrow stem cells.

Saviour sibling treatment raises ethical issues, especially when it involves a child having an operation to recover cells - clearly the child cannot consent.

Having met Katie Matthews, her children and doctors, it seems to me that great thought went into the decision to proceed with the treatment.

Mrs Matthews is adamant that Max is loved for his own sake, not for how he has helped his sister. There does seem to be a special bond between the two siblings.

She says Christmas has come early for the family and they are looking forward to being together without fearing that Megan will be in hospital needing treatment.

Whatever your views of the ethics of saviour siblings, that is surely something to celebrate amidst all the bad news this Christmas.

PS I have just had a message from Michelle Whitaker saying that Charlie is doing well, six years after his transplant.

Comments

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  • 1. At 10:36pm on 21 Dec 2010, julatsa wrote:

    This should never be done.

    Would you force an adult to provide a transplant if they were a match? No, you wouldn't, they have to consent. So why should it be any different because it's a child? And don't forget the psychological issues that will arise due to this. How would you feel, if you knew your parents deliberately concieved you in such a way as to save an older sibling regardless of what you may want or if you have a choice.

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  • 2. At 11:42pm on 21 Dec 2010, Lance wrote:

    An excellent Christmas story of endeavour and love, in fact an exellent story at any time of the year...I hope all remains well for them, for I have experienced the loss of a 9 year old through (then in the 60's) an incurable illness. the awful pain stays with you for all of your life.

    As for the achievement scientifically/medically, it is the successful end result of hard work and dedication.

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  • 3. At 00:30am on 22 Dec 2010, Tinkerbellbobby3 wrote:

    This has brought tears to my eyes. Such a lovely heart warming story. Regardless of how or why the child was born, he will be loved for the rest of his life and now so will his big sister.
    Science is amazing, what it can achieve. The doctors astound me, what they can do.
    This is not about choice after all, what choice does an ill lil girl have? None. Its about one human being helping and loving another. And if we can do that just once during our short time on earth, what an amazing gift. Brave family. They do not need critics.

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  • 4. At 00:44am on 22 Dec 2010, Jupiter wrote:

    What will happen to the little boy if the little girl die? Is he loved by his parents because of his usefulness? what if one day he say no when he realise he was created to provide "spare parts" for his sister?

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  • 5. At 10:03am on 22 Dec 2010, RobM wrote:

    To those who have commented saying "Is he loved by his parents because of his usefulness?"... do you have no children? Do you honestly think any parent would love any of their children purely because they could save their sibling? Of course not!!
    Any parent will tell you that they love their children with abundance, regardless of their 'usefulness'. I'm sure this child is completely adored in his own right - no parent could do any less - and I bet you they don't look at him with loving eyes and see bone marrow. A ridiculous suggestion. With regards to the moral choice of consent - if I were in a coma and my sister needed a kidney, I would have been mortified if I learned they had even hesitated to take it from me. I am sure I am not alone.

    All families have their trials with each other. But this family has been through a tough time and I bet you they're more loving and kind to each other than the average as a result.

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  • 6. At 11:24am on 22 Dec 2010, jizzlingtons wrote:

    @ RobM

    I agree with your sentiment, though I think you are jumping to conclusions about what others opinions/concerns are.

    The problem does not lie in who loves who for what reasons. It is because a child can be brought into the world, be subject to medical procedures which they have no control over, and then they have the knowledge that they were bred only for the purpose of saving their sibling.

    A particularly stressful situation for any child don't you think? Who knows what effects this may (or may not) have on the child/yound adult.

    For the record I'm not for or against this, but to push the issue aside when your talking about the life of an unborn child is a little irresponsible.

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  • 7. At 12:08pm on 22 Dec 2010, The Grammar Gestapo wrote:

    I think part of the problem with some of these comments is that they presume the only reason the young boy was born was to provide chord blood/stem cells for his sister. In my experience, families going down the "saviour sibling" route want another child because they want another child to grown their families, and if by having another child they can help the older sibling, then that is generally regarded as a bonus, not the main reason for having this child.

    I fully expect that this young boy will not be brought up to think of himself as a "spare part" factory for his sister: he will be loved for who he is, not for what his bone marrow did.

    I am somewhat disappointed by the narrow focus that some commentators have on this issue, seeing this child only in the terms of stem cells and bone marrow, and not realising the much bigger picture of a wanted, loved, healthy, vibrant young member of our society.

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  • 8. At 12:34pm on 22 Dec 2010, samuel2803 wrote:

    This topic is a key theme in the novel "a sisters keeper".

    What many people fail to realise, is that any form of invasive treatment carries risks. I beleive its unacceptable to put a child through those risks if they would not be directly benefiting from the treatment.

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  • 9. At 1:09pm on 22 Dec 2010, Robert Davies wrote:

    This comment was removed because the moderators found it broke the House Rules.

  • 10. At 1:34pm on 22 Dec 2010, Robert Davies wrote:

    I was disappointed by julatsa comments, and by the other negative, narrow and dogmatic remarks. I find this episode so heart warming and life affirming and evidence of our collective and cooperative humanity. A team effort was required here, some very clever and dedicated clinicians, apart from the family, who are paving the way towards further life saving and disease alleviating treatments.
    Children die every minute of every day in developed and underdeveloped countries from a whole host of conditions and circumstances, mostly brought about by adults, and generally preventable. How gratifying that adults can use common sense and ingenuity to redress the balance, even in a small way, as yet anyway. A standing ovation for all concerned.

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  • 11. At 1:47pm on 22 Dec 2010, RJP wrote:

    Without consent, a risky procedure was used to harvest a child's body parts. There parts were used to provide somebody else with a better quality of life.

    This would be completely unethical if the child were not related. I doubt these parents would ever sanction kidnapping the child of another couple and forcing them to donate. The only reason they think it's different with their children is that *they benefit* from considering rights and freedoms in aggregate between their children, in a utilitarian sense. However, rights and freedoms are not susceptible to such aggregation. They created a slave, however much they love him.

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  • 12. At 2:03pm on 22 Dec 2010, busby2 wrote:

    # 1. At 10:36pm on 21 Dec 2010, julatsa wrote:
    This should never be done.

    Would you force an adult to provide a transplant if they were a match? No, you wouldn't, they have to consent. So why should it be any different because it's a child? And don't forget the psychological issues that will arise due to this. How would you feel, if you knew your parents deliberately concieved you in such a way as to save an older sibling regardless of what you may want or if you have a choice.


    What an utterly strange and heartless view to take!

    If I was conceived in order to save the life of one of my two older sisters and found this out when I was old enough to understand, why on earth would I not be absolutley delighted that I had saved the life of one of my older sisters???? I think I would feel very special and be loved all the more because of it.

    The issue of consent to become a live donor is a non issue in the case of a baby helping a close family relative. I cannot for the life me think of any psychological problems that might arise for the donor baby unless do gooders had prevented the baby becoming a donor and the elder sibling had suffered a long lingering death as a result. In that case the would be donor baby could well suffer considerable psychological trauma when they found out later in life that he/she wasn't allowed to save the life of their elder sibling.

    I'm sure that we all know of families where the youngest child was unplanned or families with sons or daughters and the hope was to have a child of a different sex. I'm sure that all such children are equally loved because of the bonds that naturally exist between parents and their children. To suggest otherwise, as you are doing in your post in this case, is quite wrong.

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  • 13. At 3:34pm on 22 Dec 2010, Phil wrote:

    The previous comments ignore what for me is the significant issue here.

    "By opting for IVF and Pre-Implantation Genetic Diagnosis they were able to select an embryo that was free of Fanconi Anaemia AND whose cells were able to cure his sister's bone marrow failure."

    Whilst I understand that the family do not want endure and put another child through the heartache of the same condition, I struggle to accept this assumed right of selection which appears to be negligible to others.

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  • 14. At 4:14pm on 22 Dec 2010, catlover6 wrote:

    Although I am very pleased for the family, what happens if Megan gets sick again and only her brother can save her?
    The parents would have to decide whether once was enough or continue to use their son as a donor. Not an easy decision to make.

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  • 15. At 4:50pm on 22 Dec 2010, Steve Berry wrote:

    I'll keep this very short. julatsa has clearly never had kids. Kids are loved for their own sakes, not as machines. But if Max can help his poorly sister, I'll bet that once he's old enough to understand he'll be immensely proud

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  • 16. At 5:06pm on 22 Dec 2010, AnnieC wrote:

    Has anyone read the book "My Sister's Keeper" by Jodie Picoult or seen the film? Agreed it's fiction but there is a lot of research behind it. Where do you stop? If the daughter needs more treatments, is the brother to be used constantly as the supplier of blood, marrow, cells, etc? Is it fair to bring a child into the world as spare parts? Are we interfering with the natural course of things too much now?

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  • 17. At 8:31pm on 22 Dec 2010, HJey wrote:

    I think this is a great story. It seems that if it is argued that this child was only conceived for the purpose of the transplantation then how is this different to when people conceive a child to be a playmate for an older child or to cement a marriage? This child, of course, was not only conceived for this purpose but will be loved by their parents independently of their 'purpose'. It also seems that consent would not be such an issue as I believe no one would refuse to provide organs for a sibling. If anything this seems like a very honourable contribution to make and it has been made when the child is very young. He can live with the knowledge that he saved a life for the rest of his life.

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  • 18. At 10:47am on 23 Dec 2010, Megan wrote:

    It's really quite simple.

    Listen, you nay-sayers. If you were, heaven forbid, in the situation where you had an ill child and 'saviour sibling' technology was offered, you could of course, based on your opinions, decline. Would you be happy if a load of folks jumped in to shout about how wrong your decision was? Of course not, you'd expect them to have respect for the difficult choices that you had made.

    It's the same for those who do choose this route. It's not one you take lightly, and they too deserve respect for the choices that they make.

    As for those in the health trades, as with any other treatment, if they don't feel comfortable offering it, they can always refer patients who wish to follow that route to practitioners who are comfortable with it.

    Not sure what I'd choose, to be honest. Not an option now, apart from my daughter being healthy, the 'baby factory' has packed it in so siblings, saviour or otherwise, are not going to happen :)

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  • 19. At 7:22pm on 24 Dec 2010, Andonova wrote:

    I think this is a human rights violation. This young child, Max, had no say in the matter. This was his body and his parents do not own his body and cannot give parental consent for such a "conflict of interest".

    Moreover, why in the world is one child valued more than the other? It certainly seems that the Matthews had Max in order to help the little girl or else they wouldn't have "select[ed] an embryo that was free of Fanconi Anaemia AND whose cells were able to cure his sister's bone marrow failure".

    Though it's exciting that this scientific "miracle" worked for the first time in Britain, I certainly do not think it merits celebration. No violation of human rights deserves celebration and no "invasive procedure to recover bone marrow stem cells" done on a baby should be spoken of in positive terms.

    I implore all parents to learn some ethics. This is should be taken as a non-example of doing everything you can to save one child.

    In simple terms, why have two victims when you can have one.

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  • 20. At 12:25pm on 25 Dec 2010, Megan wrote:

    Andonova wrote, "I implore all parents to learn some ethics."

    Why, my dear, are you so arrogant as to assume that YOUR interpretation of ethics is the correct one?

    Read my post just above yours, and give other people the respect for their opinions you apparently would like shown to yours!

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  • 21. At 7:05pm on 26 Dec 2010, busby2 wrote:

    19. At 7:22pm on 24 Dec 2010, Andonova wrote:

    I implore all parents to learn some ethics. This is should be taken as a non-example of doing everything you can to save one child.


    I implore all those who consider this heart warming story is somehow "unethical" and a "violation of human rights" to open their eyes and see how mistaken they are.

    I find it hard to believe how much opposition there has been on this board to this heart warming news story! It is though some people actually want this young girl to die a painful death because they believe that is the ethical stance to take!

    How can it be a violation of the human rights of the baby to use the baby's stem cells and bone marrow to save their older sibling? Applying those "ethical values" as a blueprint would make it unethical for a child to be a live donor or to receive a transplant of any sort, including blood, because they cannot give their consent!

    In simple terms, why have two victims when you can have one.

    In simple terms, why have one victim (ie a child dying slowly from a painful disease) when there is no need to have any victims?


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  • 22. At 8:45pm on 27 Dec 2010, mscracker wrote:

    "By opting for IVF and Pre-Implantation Genetic Diagnosis they were able to select an embryo that was free of Fanconi Anaemia AND whose cells were able to cure his sister's bone marrow failure."

    This seems to suggest there may have been other embryos that were discarded due to the same condition Megan suffered from and /or lack of donor compatibility.While Max's purpose as an involuntary donor may be controversial, at least he survived the "Genetic Diagnosis" screening process to help his sister. Would the assumption be correct that his less perfect sibling embryos were simply flushed? Or, what actually happens to embryos that don't pass genetic screening criteria? That would really be the part of the story I would find disturbing.

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  • 23. At 2:32pm on 28 Dec 2010, busby2 wrote:

    22. At 8:45pm on 27 Dec 2010, mscracker wrote:

    This seems to suggest there may have been other embryos that were discarded due to the same condition Megan suffered from and /or lack of donor compatibility.While Max's purpose as an involuntary donor may be controversial, at least he survived the "Genetic Diagnosis" screening process to help his sister. Would the assumption be correct that his less perfect sibling embryos were simply flushed? Or, what actually happens to embryos that don't pass genetic screening criteria? That would really be the part of the story I would find disturbing.

    I assume that you do not approve of IVF on principle. This procedure has however allowed many couples to have children who would not otherwise be able to. Is that wrong? Is that evil? I don't think it can be wrong or evil to bring happiness and life into the world, which is what IVF does for many couples. And don't forget that in natural conception, most eggs are either never fertilised or the foetus may not develop and grow into a healthy foetus that is carried for full term.

    What IVF does is help couples have healthy children, and in this case to have a baby free of Fanconi Anaemia who would be match for their older sibling. If this procedure had not been available, the parents would have tried for another child naturally. If they had naturally produced a healthy child that would have been a match, would you have supported the baby's stem cells and bone marrow being used to save their older sibling? I ask the question because clearly some of those contributing to this blog would not have supported that.

    The crucial reason for rejecting the nay sayers in this case is that they believe the alternative of watching a 9 year old girl die from a long and painful illness was preferable to the parents having a baby that would save the life of their child. Thanks to this procedure the parents have a complete and healthy family, just as they always wanted. I'm delighted for them.

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  • 24. At 4:34pm on 28 Dec 2010, mscracker wrote:

    busby2 wrote:"I assume that you do not approve of IVF on principle."
    Dear busby2,
    You might assume correctly, however, I was attempting to ask where the genetically "imperfect" or non-donor-compatible embryos end up in this instance.That being if there were indeed surplus embryos created in the process.It seems a disturbing facet left out of the story.
    And yes, I would choose to donate a sibling's blood marrow to save another child's life even though the sibling does not have full consent.Children in general do not have consent in medical procedures, parents do.At least in America.

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  • 25. At 10:22am on 29 Dec 2010, Tinkerbellbobby3 wrote:

    All of us on this board are to count ourselves lucky enough that we have to come to a forum to discuss such matters and are not sat in a hospital with a very poorly child, trying to decide what choices to make.
    How fortunate we are.

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  • 26. At 2:15pm on 29 Dec 2010, mscracker wrote:

    Tinkerbellbobby3 wrote: "All of us on this board are to count ourselves lucky enough that we have to come to a forum to discuss such matters and are not sat in a hospital with a very poorly child, trying to decide what choices to make.
    How fortunate we are. "
    I very much agree. We are fortunate & blessed indeed, but hopefully not complacent.

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  • 27. At 03:39am on 08 Jul 2011, StarPie wrote:

    Well, if the Government introduced genetic screening for would be parents to alleviate the risks of bringing defective children into the world and costing the tax payers heaps for their treatment and care, then you wouldn't be here debating such a barbaric and unethical use of perfect children being used to save defective chilren! All this Saviour Sibbling proceedure is science in reverse psychology turning ethics up on it's head, because the primary aim should be genetic screening to aleviate diseases and genetic defects before getting pregnant in the first place and saving the taxpayers money for educating the perfect children left how not to play God with reverse psychology science in the future!

    There's no ethics in parents taking away a human right of any child to make their own decision to save a sick or dying sibbling, this just prove's how irresponsible parents are today, treating their children as posessions to do with as they wish, just like the Nazi SS thought of with the Jews children and turned the left overs into soap for the Third Reich!

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