The Price of Life #23weekbabies

Last week I came across Adam Wishart for the first time – he had produced a documentary about the cost of cancer drugs, you can view the film and read my blogpost about it here. Adam recommended the book he wrote about the history of cancer and his family’s experience of it, you can get the book, 1 in 3 on Amazon here. I devoured it this weekend – not quite finished but have learnt a lot about the history of the disease – alongside an affirmation of my own experience with my Dad’s cancer. Will blog about it once have finished the book and taken some time to reflect.

…then yesterday I turned on the TV to watch Andrew Marr and before turning it off caught sight of the billing for Nicky Campbell’s BBC Big Questions, you can catch it on iplayer here. The programme was debating, amongst other things, the cost of care (immediate and throughout life – medical and social) for babies born at 23 weeks. Today I found the trailer for the programme that you can view here:

 

I’ll be watching BBC2 at 9pm on Wednesday to see the film. This is an area that is close to my heart – my PhD looked at educational curriculum and provision for profoundly disabled children back in the late 90s – focusing on education in England, Wales and Ireland. Not all babies born at 23 weeks will have a profound disability, but lots of them will and the level of support that these babies will require if they live into childhood or adulthood, is in my opinion, far beyond what most people can comprehend without any prior knowledge or information. These personal challenges sit within a context of increasing demand on services, new challenges in the provision of support, more babies surviving and some with greater disabilities, alongside increased life expectancy for all groups – including people with disabilities. You can read more about the changing demands on adult social care in the Dartington Review on the Future of Adult Social Care published by research in practice for adults.

Watching the BBC Big Questions programme yesterday I was struck by how difficult and emotive a topic this is – there was a consultant of public health representing one side of the debate, and two parents of a baby born at 23 weeks presenting the other, at least that was how it was set up to appear; in actual fact the consultant was making an eloquent argument about the ongoing care and support needs that the NHS does not have resource (or remit) to provide, and the parents were sharing their experience and pride in their daughter’s survival and development. Their apparent frustration at the consultant’s view masked what I think was the connection between them, as I understood it they were all presenting the same argument, if babies born at 23 weeks survive, they are likely to require care and support throughout their lives, and currently this support is not readily available.

The parents believe that the decision about the level of support available to their baby was their’s to make with the medical staff; my sense is that few parents when presented with this discussion would have the emotional or physical reserves to engage with it fully so soon after childbirth, or that few could really understand the potential implications of their choice without impartial information and advice available to them. I’m sure this will be picked up and I’m looking forward to watching on Wednesday and to the inevitable ongoing discussion about how we make decisions about the price of life.

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21 thoughts on “The Price of Life #23weekbabies

  1. 2 months ago my daughter, Medina, was born at 23 weeks and 5 days. She died 3 days later. I cannot put the pain in loosing my baby in words but what I can say is that it was the hardest thing i’ve ever been through and i’m still going through.

    I watched very carefully the debate on question time and the documentary on 23 weeks babies and I think it was great to see that a programme like this was put together, no matter how much it hurt watching. I felt I had to comment on the subjects raised and these are my comments;-

    I was very angry when I saw health workers such as Daphne Austin (West Midlands NHS, Specialised commissioning) promoting not to resuscitate or help 23 week old babies and even Adam Wishart (the science writer and presenter of the documentary) suggested at the end of the programme that he would understand if the NHS should adopt the Dutch’s rule and stop saving a baby when born at 23 weeks. Adam also went on to say that resuscitation for a 23 week old baby should be the exception rather than the rule and also suggested that the decision should be with the medical staff, rather than the parents. I completely disagree, for the following reasons;-

    A 23 week old baby is a still a baby! That baby is born with a life, which gives that baby the right to be saved and the fact that it costs the NHS x amount of money to keep the baby alive has nothing to do with whether the baby should be saved or not. If a 12 year old boy was in a car accident and was severely paralysed as a result, but still alive, wouldn’t it be correct for NHS to do everything possible to save that boy, regardless he was going to be paralysed or not? Even if the chances of that baby surviving are very slim, the fact that some babies can survive, such as the 2 examples shown in the programme, then every effort should be made from the NHS to save that baby.

    The main reasons discussed on the programme for not saving a 23 week old baby is because of the money involved to keep that baby alive. There are so many areas in NHS which seem to have no shortage in money and some of these areas are not even life saving treatments, such as IVF and cosmetic surgery. Neonatal units are essential to keep premature babies alive and as this is life or death, this is not an area where money should be withdrawn on NHS.

    I wanted to donate money for an incubator, in memory of my daughter Medina, after her death but the hospital told me that they didn’t need an incubator, as they has recently been donated one, by a mother who lost twins. The hospital staff also told me that they have charities set up for donations for neonatal equipment and the unit is well equipped with most things due to donations they receive. The fact that a lot of parents who’ve had a premature baby, donate to the neonatal unit, shows that those parents see the huge importance of the neonatal unit and want a facility to be there to help any premature baby survive and get the best care they need.

    With regards to whether Britain should follow the Dutch, Britain should not follow the Dutch, rather they should follow us. I’m proud of being British because of the rights and good treatment and facilities the citizens get. In other countries such as the Middle East, we can see on the news exactly how bad the citizens get treated and how they have no rights on their country. I’m proud to say Britain is not like that and is governed by what the people who live here want. The parents of the babies should have the right to choose whether there baby is given a chance to live or not and not dictated to them by the law or medical staff.

    The decision of whether the baby should live or not, should be with the parents and not the medical staff, as the parents are the ones who will look after the child. The parents love their child, whereas for the medical staff that child is just another patient on the list and they may have other factors, such as costs and statistics, which will prevent them doing all they can to save the baby. The parent will be able to say if they really want their baby to survive, no matter what the consequences are.

    However I agreed with the following points;-

    The lady in the documentary, Catherine Rotherford, Nurse at neonatal unit and mother of a disabled daughter and talks about the difficulties they faced and I completely agree that NHS should provide care for her daughter throughout adulthood as well as when she was younger.

    I also agree that there should be more focus on preventing a women going into labour at 23 weeks and more research and technology provided to delay a women giving birth. Only after my experience of loosing my daughter Medina, did I realise the full extent of how important a week can make to whether a baby survives or not. It is such an awful thing to loose a baby or the baby to become disabled because it came out too early and more needs to be done to prevent this from happening.

    Finally I want to end by saying that when I was in the process of loosing my daughter, I was falling apart. I honestly didn’t know how to handle that situation but I found the staff and the facilities provided to me and my husband during this awful time extremely beneficial. The care we received and on going care now, such as counselling service, is amazing and we should be very proud that we have such good facilities. However I do have a concern in the back of my mind – did the doctors give up in the end or did they do everything possible to save my daughter?

    1. I agree with you it should be the parents who decide not the doctors I post my story as well feel free to read it n sorry for ur lost she will be miss n never forgotten I like to think all the babies are together in heaven so they won’t have to be alone

  2. Hi Laila,

    Thank you so much for sharing your experience and taking the time to comment. I am so sorry to hear that Medina only lived for a few days; I can’t imagine what you, your husband and family are going through and I hope that Adam’s documentary will continue to raise people’s awareness and understanding so that you are able to discuss your experience further.

    Having now watched the film (I wrote this post before I had) I suspect I am more in agreement with both Daphne and Adam than you are. I’m not sure that they were suggesting decisions should just be about cost (although that certainly appeared to be the focus in the BBC Questions debate) – I think they were saying that where the odds are so poor, where medical staff can not be confident that we are making a positive difference, then we would need very good cause to act. While I understand and completely agree that a baby born at 23 weeks is still a baby, I’m not sure that I’m comfortable with the suggestion that we should do everything possible to keep them alive. My concern is less about the cost issue and more about whether we can be confident that the treatment given is not putting them in pain or causing them further suffering. My secondary concern is that decisions of such magnitude are expected to be made by parents – I’m just not sure that they are best placed to make those decisions, because of how close they are to the baby.

    To take the example you give about a 12 year old boy in a car accident, I don’t think parents would be asked to decide on what treatment he should receive. Most parents wouldn’t for a moment begin to know how to treat a child in that situation and so my understanding is that a team of medics would decide on the best course of action. I think doctors would then ask parents for consent to treat him, but I don’t think they would ask parents to decide whether they should treat him with something that only gives him a 1-2 in a 100 chance of surviving. I suspect that would not be considered an option to even discuss with the parents, especially if we didn’t know the impact of that treatment on the boy in terms of pain or discomfort.

    I don’t have children and can’t imagine how parents even consider what to do in these situations. My own current moral dilemma is with regards to my father who has terminal cancer. He is in his early 60s, his parents lived into their 90s and until a few years ago there was nothing to suggest he wouldn’t do the same. The reality is that as far as the doctors can tell he has a few months to live – my greatest concern is that he is not in pain, rather than he endures further treatment (such as more chemotherapy) when there is no evidence that it will cure him and little evidence that it will actually extend his life. I find it a hard reality, there is of course a part of me that hopes he will be the one person in a hundred who beats the odds and survives, but I know that this is unlikely to happen.

    I’m not saying this is the same as your situation with Medina, I offer the comparison to share my thinking with you, as you so generously shared yours. I wish you well in the future and I hope that you continue to receive good support. Thanks again for commenting.

  3. If a baby is going to be born and spend everyday for the rest of their lives in a wheelchair, unable to talk, feed themselves, dress themself, wash themself why is it not ok to choose that your child, whom you love more than anything doesn’t deserve that life. It is no life. I agree that most disabilities can be helped and they would have a quality of life but if they are not going to be able to take care of themselves in any way you have to ask yourself would you want to live? Obviously this is a small percentage too and if I found out I was going to have a child with a serious disability I would probably abort. And to the woman who says she spoke to god to help her, not everyone believes in god and they don’t see it as you wouldn’t be given something you couldn’t handle. Its about the quality of life that child would have.

    1. No, it’s not about quality of life, and it’s certainly not about quality, or lack thereof, from your point of view, it is the child’s right to life, that is what matters; you have NO RIGHT to choose for another human being, and how would or could you possibly, truly, know whether their quality of life was acceptable to them, and by what gauge would you measure that? Tough issues demand tough responses, and for people who dislike the inconvenience of a life that another has the right to, I would say there’s always ways to improve “quality of life”, but we cannot stand as arbitrary judge and jury when it comes to human life. “you would have to ask yourself would you want to live?”; ridiculous, null-and void as an argument, because that’s you, but it’s not your question to answer is it, chloe? Abort, and you’ve denied the child the right to live; the child has been treated as a commodity that also represents an inconvenience to you. Disgusting. There are alternatives if you can’t be bothered with your child, such as adoption; but that would involve far too much effort wouldn’t it? Get Real!

  4. I gave birth to a 27 week 2lb baby 20 years ago. My son has cerebral palsy a shunt and other related health issues. He has been through many surgeries and life has not been easy for him or I. However, he has grown into the most remarkable young man with a wonderful joy for life. He has given so much back to me and I do not regret for one instant giving birth to him. Against all the odds and advice from experts about his future he has proved them wrong. He has just gone overseas to college and starting his new independent life full of enthusiasm. I do not believe abortions should be granted over 24 weeks (having seen 24 week old babies in the neonatel ward) in fact, I do not think abortions should be granted over 20 weeks. I am not anti abortion but strongly feel that the abrotion limit is far too high.

  5. I have just watched Big Questions this morning. My feeling about allowing a pregnant woman to decide whether to keep a baby who she knows is going to be disabled is that it is not her choice. She has put herself in a position where she has become pregnant and that was her choice. Even in the case where this was not her choice because she has been raped I would still not agree with abortion.

    Regarding whether heaven exists I see heaven as a state rather than an actual place.

    1. I do not agree with abortion unless the life of the mother is in danger, however in the case of a 15 year old girl coming home from evening college and being raped by some man and becoming pregnant , that could cause some emotional problems, not just for her but for her parents as well. In that case both for the girl and parents, an abortion might me justified.

  6. I don’t believe that a baby should be aborted after 23 weeks because if they are determined as able to live in cases where premature labour has started then it could live outside the womb at that stage. You should make the decision before that stage as its unfair to that child. For people who find out they’re pregnant at 23 weeks or something well its just tough luck isn’t it. I was taking contraceptive pill but I had a daughter a year ago, it was my mistake not hers why should she suffer?

  7. I believe that when it comes to the issue of abortion, we really cannot make general decisions- every case is quite simply too unique. I find it rather difficult to listen to those who proclaim themselves 100% anti-abortion based on their religious beliefs that God has the ultimate decision as to when a life should come to an end. Do such people ever ask why their God has placed any poor mother in such a horrible predicament. Why should any person have to withstand such testing from God? Of course abortion should not be abused- abortion should not be used as a final method of preventing pregnancy as a solution to ridding a ‘careless mistake’. However there are cases when responsible women and couples together, can come to a decision which is best for their child, who at the end of the day, they love more than any of us spectators.

    1. Again, another person who sets themselves up as judge & juror, who criticises God but can’t see that they talk about the child as a property, a commodity, that they can “come to a decision which is best for” – who says? And God doesn’t place anyone in “such a horrible predicament”; the one we (mankind) chose to be lord of this world caused this “predicament”, you just perpetuate and compound the evils of that perversion with your misguided belief that abortion can be morally justified in certain cases; it simply cannot. Btw, love doesn’t come in different amounts; we don’t love someone less or more, we just love, and it’s a CHOICE, not an arbitrary feeling that we may change our minds about and walk away from when the mood takes us. Stop using fake “concern” for the unborn child or their parents, as a cover for not being able to deal with the inconvenience, however large that is, that a potentially disabled human being would present to you.

      1. It’s evident, David, that you have some rather extremeist views on this topic. I don’t however agree that my opinion suggests that I view any unborn baby as a commodity, quite the contrary. I believe that all people are equal in this world should they be slightly or severely disabled is irrelevant. My point is however, that’s extremists such as yourself simply cannot make black and white of such a complex issue. I did state that abortion should in no circumstances be abused. We must try to understand and accept however a parents decision.

    1. “I think each case needs to be evaluated. In some cases, abortion is a solution that saves one’s mental health or her life.

      I absolutely believe in taking responsibility for one’s actions, however there are cases in which women and girls become pregnant when they did not have control over the situation. For a woman to be forced to carry to term a baby that is the result of rape or a forbidden relationship seems cruel. In addition, there are medical reasons for which abortion should be allowed (e.g., babies who will not survive or have quality-of-life; serious danger to the mother’s health; etc.)

      In summary, I don’t believe in abortion as an alternative to birth control, but do think that there are cases where it is the correct choice.”

      IVF expert opinion.

  8. i myself was pregnant in 2001 i was told early jan that my baby boy( who i was then 34 weeks pregnant with ) had fluid on his brain (during a routine scan ) 26 ml of fluid were showing i was then told i would go to st marys hospital in manchester to have a detailed scan i went there the day after were i was told there was nothing they could do as the putting a shunt in wasnt a option ,due to the amount of fluid there for if my son did survive he would have major problems there fore i was given a choice to terminate my pregnancy or have my little man on life surport and have to turn it of (this wasnt a option as i had 2 other children ] so as deverestated as me and my husband were we decided on termination (the most horrific thing a parent has to do ) the following week on the 18th jan 2001 i was taken to st marys were i had a elected termination ,my gorgous son was born asleep the following day 19th jan (on his daddys birthday ) i dont regret what i did i couldnt put my baby through a none exsistant life x im sure a lot of you out there will have opinions but this was my choice and the right one for my son xx diane

  9. The abortion rights group are another form of extremism and extremism takesrights away. I find it hard for a man to understand what a women goes through. These cruel and sick people who shout out and show placards to women who are in a vulnerable situation.

  10. I would have had another brother or sister if my mum hadn’t had a baby aborted. She had been exposed to german measles. There were 3 of us already. My mum went on to have twins. If we had a deaf / blind child in our family they would have been loved and cared for but our lives would have been very different. We had very little money and my parents would not claim any kind of benefit or allowance except child benefit. I’m glad she made the choice she did. I would have done the same.

  11. I gave birth at 23 weeks n I was 17 n the doctors gave me steroids to boost the baby lungs but told the longer I hold the baby the greater chance of more development. My bleeding won’t not stop n soon I gave birth. I didn’t hold him for an hour when I dud he wasstill warm n chest moving up n down. I scream n say why not put him in a incubation n I was told we told u his lungs were not ready. I talk to a lawyer n he said hospital policy is not to save a baby that is 23 weeks n with a low birth weight. My baby boy was just 11 oz n I felt that should of been my decision rather to save him n deal with the problem of metal issue then rather years later haunted me wish I was older to stand up for my child n had parents who just push it under the rug. They told the hospital no funeral so the hospital took care of it n everybody knows they burn babies. I have been this close up person even though I keep living n every televisions show or reports where they save a baby at 21 weeks I always wonder why that could not be me at 23 weeks why the doctors I had felt like my baby didn’t deserve a chance r.I.p baby Edward 2000

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