Assisted Conception and Disability

Rosemary has battled severe health problems for many years. Now 36, and in a new relationship, she wants assisted conception. But it's extremely risky. Should the doctors help her?

Rosemary has battled with severe health problems for many years. She has Ehlers-Danlos Syndrome and, following complications of spinal surgery, she is now a full time wheelchair user and her breathing is impaired. She receives her nutrition via a tube fed directly into her blood stream and she empties her bowels into a bag attached to the small intestine.

She has always wanted a child and now, aged 36 and in the early stages of a relationship, she asks for assisted conception.

The fertility doctor refers Rosemary on to various specialists at the hospital, who enumerate the risks. If Rosemary is to have IVF, she'll need a general anaesthetic which would be extremely risky for her. Furthermore, any pregnancy could be life threatening to Rosemary and a potential fetus, and the team are concerned about the welfare of a future child. Also, if Rosemary becomes pregnant, her child could inherit Ehlers-Danlos Syndrome as the condition is genetic.

While hospitals look after women with complex problems who are already pregnant, enabling a woman like Rosemary to become pregnant is an ethical challenge of a different order. But Rosemary herself is adamant she wants to take the risk, whatever the potential consequences.

Should the fertility team help Rosemary get pregnant?

Joan Bakewell and a panel of guests discuss this ethical issue.

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43 minutes

Last on

Sat 10 Aug 2013 22:15

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The Panel

Alison Murdoch, Professor of Reproductive Medicine and a Gynaecologist and Head of the Newcastle Fertility Centre at the University of Newcastle 

 

Deborah Bowman, Professor of Ethics and Law at St George’s University of London

 

Kaliya Franklin, Disability campaigner & has Ehlers-Danlos Syndrome

Your comments

 

 

Congratulations on the most recent series of this programme. I have always found this programme very interesting, but I thought this recent series excelled in being thoughtful and thought provoking. Thank you.

(Fiona McQueen, Stockport)

 

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I feel that the infertility clinic acted irresponsibly. Rosemary assured them that she had the right support in place but did they explore this? It is relevant that Rosemary was not in a long term relationship with someone who was there to care for the child and this point was not considered by the ethics committee. Her partner already had 4 children and did not live with her. Was he a partner or a sperm donor? The welfare state should be there to support persons in time of need. It should not be there for lifestyle choices such as being used to care for a child who was conceived knowing that the parents could not possibly care for the child. Likewise it should not be there to support families who desire numerous children. If we lived in a society where parents were forced to financially support their children then this situation would probably not have arisen. Would her “ex-partner” have agreed to her wish if he had been required to financially support their child? I expect not. When a single mother/father applies for benefits there is now no requirement to give the other person‘s details in order for the state to collect maintenance. This may be a factor in our high birth rate.

(Jane)

 

 

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I've just listened to the programme about assisted conception and I am furious on behalf of the child, who was given scant regard by all involved in exploring whether fertility treatment should be given to Rosemary. Surprise surprise, the partner disappeared following Rosemary receiving treatment and Rosemary now has to rely on the state to help her raise the child. This is at least an eighteen year commitment! Moreover, the child will almost certainly be disadvantaged in life, even if she does not inherit her mother's condition. She will be disadvantaged by being cared for by a succession of strangers and then by becoming a carer for her mother as she grows older. I am appalled how the needs and rights of the child are ignored by those making decisions on whether to offer fertility treatment. This child has a right to a childhood, an adolescence and to become a responsible adult; sadly something that those assisting Rosemary to become pregnant are not.

(Chris)

 

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I have just listened to the episode regarding Rosemary having IVF and have a slightly different perspective on the matter from some panellists. Firstly, I am an ethicist by profession (teaching and research in professional and research ethics) and secondly I have a disability that arises from a genetic predisposition. I have not had children, by chance rather than design, and am profoundly relieved not to have done so. Not because of my own risk but because of the risk of passing on a considerable burden of suffering to my offspring. To say that I would never deliberately pass on that risk is not the same as to say that it would be better if I had not been born or that my own life is not worth living. So I think the argument based on that conflation is flawed (though very widely used). One fundamental ethical principle in bioethics as well as more general ethics is the prevention of suffering and, where it cannot be prevented, the alleviation of suffering. If Maria does have her mother's condition then she will inevitably suffer quite considerably. For those of us who already exist, then the 'accept and get on with it' attitude is the right one and if by chance your child has or develops a condition then raising her to be resilient enough to cope well is admirable. However, I don't see how one can move from that to intentionally taking such a colossal risk with another human being for whom you do not speak. Our own attitude to risk and disability is subjective and  not relevant to the assessment of whether we are justified in taking those risks for another person. Satisfying a personal longing for a child under those circumstances is more difficult to justify than it looks if you carefully separate out whose risk we are talking about and what risk over a lifetime accrues to the child

(Dr Ruth Walker, University of Waikato, New Zealand)

 

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I was puzzled and very concerned that the decisions discussed, while interesting, assumed there was an unlimited pot of money and manpower to provide for any outcome.  Surely any decision must take into consideration the needs and desires of other people who would miss out if so much was allocated to the desire rather than need for this patient.

(Cynthia Milligan)

 

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I listened to Inside the Ethics Committee this morning after a friend alerted me to the topic.  I listened intently and would like to say you did a fantastic job! I am, myself, an EDS sufferer.  I’m not in nearly as dire a position as Rosemary, in that I am still able to exercise regularly, and I only have to wear splints and occasionally use a stick.  This, however, came as a diagnosis after 37 years of being told I was accident prone, had growing pains, being told to go away when visiting my GP because I couldn’t have a back problem at my age and didn’t know what I was talking about, numerous breaks and dislocations, that my dizziness and passing out were because of vertigo...  As with many undiagnosed sufferers, individual symptoms were treated with surgery or physio, but all the signs that were there since my childhood were ignored. Interestingly enough, I was told ten years ago that I couldn’t have children because my pelvis is too unstable.  Add to that my inability to maintain a womb lining for more than two weeks before bleeding, and I’ve had to accept that my numerous nieces, nephews and godchildren will be the closest I get. I listened intently to the programme this morning, feeling Rosemary’s heartache, understanding her assessment of risk and outlook on life in the same way I’ve come to terms with it.  I admired her courage not to give up every time a door was shut in her face, although I suspect that determination came partly from her years of trying to find out why she was “different”.  I was astounded by some of the thoughts and comments of those involved, who could be so judgemental towards a woman’s basic ability to bear children, but was also able to understand why they felt that way. Congratulations Radio 4 on such a well-put together programme!  It’s given me even more determination to complete the challenge I’ve set for myself – the full Thames Path Challenge to raise money for the EDS UK Support Group.

(Alison Cross)

 

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I missed one argument in the discussion. Rosemary’s risks were in kind the same as those of any other mother. Her pregnancy complications were not unique to her – other women with a different medical status could also have had the same problems during pregnancy.

(Dan Hanqvist)


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I agree with many of the comments on your web site about the NHS decision being circumvented by the private sector and having obtained a successful treatment the NHS being returned to provide the on-going treatment it originally refused. However, I feel a point was missed that has a bearing on

all treatment provided by the NHS and that is the effect undue pressure and trauma of events has on our limited NHS staffing resources. The effects of putting NHS staff under these pressures is seen on a daily basis with staff going 'on the sick' and having a similar effect on the remaining staff as

they struggle to cover these absences. This applies to top consultants under pressure as much as it does to HCA's/Nurses under pressure. It was unfair of this person to put the NHS under this obligation after it had refused treatment taking into account the fact that its original decision would have considered the best use of its resources.

(Charles Morgan)


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My own disability does not give me as many problems as Rosemary's, and 23 years ago when I had my first IVF baby I was in better shape than now, but as a full time wheelchair user I am pleased to say that I had nothing but support and encouragement from the NHS doctors who facilitated this, nor with those under a joint NHS/private scheme who helped me again three years later.  When the second pregnancy turned out to be twins, my mother's comment was that she was glad it was me having twins rather than my sister-in-law as I was much more organised! My husband and I have been able to give them virtually all the opportunities and indeed many more than most children have, and they have grown up into independent adults who understand that everyone is different but each has something to offer.  I wish every person learned that very important lesson.

(Diana)


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I was appalled at this morning's programme about the incredibly selfish Rosemary and her wish for a child of her own that seemed to completely ignore the effect on the child, on her partner, and the huge expense and resources she would need now and in the future. Others have voiced all my concerns, but one thing was not mentioned so far. It came as no surprise to hear that Rosemary's partner at the time, has already left her. It was shocking to hear her calmly saying how she had made plans so her partner could be left with the new baby if she were to die giving birth or later on.  What a way to start a relationship! I pity that man had these circumstances come to pass. She thought she had an answer for everything - for example "I wouldn't pick the baby up at arms' length"!  There is a lot more to looking after a child than that, and she with the  serious degree of illness and incapacity that she has, needed helpers all the time for both a small baby and in the future. I understand that many women would be heartbroken not to be able to have a baby of their own, but I wonder whether she would have been considered at all suitable had she applied to adopt a child.  Possibly not, so in her eyes was it really such a good alternative to have her own child? Requiring vast amounts of medical intervention and expense; and always with great risks for her and the child. I do think that in these circumstances she should not have pushed so hard to get what she wanted, and I was disappointed that anyone on the Committee, not to mention the doctors on her case, agreed that she should go ahead.

(Jennifer Green)

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I found the program today extremely moving and the different perspectives highly thought-provoking.  What has prompted me to write to you however are the comments that have appeared on your website, several of them accusing Rosemary of being selfish because of her determination to have a baby despite her disability.  We are all different, and another woman with the same health problems may not have been as able as Rosemary to succeed.  BUT, Rosemary is extraordinary.  She has achieved what many able-bodied people can only dream off, Olympic success.  She clearly has the physical and mental strength to achieve incredible things.  While she 'was' driven by the natural and unstoppable urge many women have to conceive a child, she had thought long and hard about every  possible complication and, one by one, weighed up the risks and how to best mitigate them.  I don't blame the original medical team for denying her IVF treatment, but I absolutely congratulate the second team for recognising that Rosemary was a special case and deserving of this chance of happiness. Their decision was ultimately justified by the outcome, even though there is a chance that the baby might suffer the same disability as this can be better managed with early diagnosis. Unfortunately, many less incredible people can only judge others by cross-reference to their own limited abilities. This wasn't selfishness; it was an extremely well-calculated risk. She knew it would take super-human strength to succeed, but she also knew that she could do it.  Well done - even better than Olympic gold I think!

(Stephen Damment)


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Like others, I too am concerned at the amount it is costing to enable Rosemary to bring up her baby. A night-time nurse and one for 'part of each day' must be astronomical. We could not afford this resource for dad to come home after his stroke. Was the cost ever discussed with this lady; clearly the 'father' (with whom she was not living and who is not going to look after the baby should anything happen to Rosemary) was never a huge part of the equation, unsurprisingly they are no longer 'together'. My feeling is that because of Rosemary's disabilities, the need for two loving parents in this case was paramount. This fact did not appear to even feature when initially assessing Rosemary for IVF treatment - soley focusing on her disabilities and her ability to carry a child. This is where I feel this child has been failed; my hope would be that Rosemary meets another partner, or this baby will become, at best, her carer, or at worst, require care herself.

(Emma)


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I am appalled by the total selfishness and arrogance of this woman and the unethical behaviour of the clinicians who provided her with IVF following a lottery - she had already been refused IVF by responsible NHS clinicians for good clinical reasons. She should have been told that she had to get pregnant naturally and if that was not possible then sadly IVF would not be available for her. The consequences of her decision are massive both financially and emotionally. I am particularly angry about the expense  to the Health Service/Social Services/Education services etc arising from her decision and treatment and I am not prepared to pay for these and she should have been informed that any costs arising from her treatment and (sadly) those of her child would be her responsibility for ever/life - would she have made the same decisions if she had been responsible for these costs? I think not! This is an utter disgrace and an inappropriate use of medical knowledge/advancement.

(Iain)

 

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I think that Rosemary is totally selfish, especially when there is a 50% chance of the child inheriting the disease.  I too would have loved to have had a child but it would have been out of wedlock and I did not think that was acceptable at the time or fair on the child. I am astonished at the doctors agreeing to do the operation. We can't all have what we want. Perhaps you would let us know if the child is affected.

(Carol)

 

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I found the programme this morning about IVF treatment for a woman with disabilities very interesting. What I found lacking in the presentation was a focus on the needs of the unborn child. In the trailer for the programme, you said it was a dilemma for the woman 'and her doctors'. I know that the legislation is very weak, but surely the discussion itself could have focussed much more sharply on the implications for attachment and practical care of a child having multiple carers. Either the presence of a social worker on the Ethics Committee or an assessment by a social worker would have addressed these issues. (There are numerous child placement experts in teams throughout local authorities and voluntary organisations such as BAAF and many social workers in adoption now have experience of assessing applicants with disabilities.) I have doubts that a medical practitioner can fully make these judgements. I contrast this rather casual approach to the thorough approach taken in adoption. At the end of the programme, it was boldly stated that Social Services were now offering a huge care package, the ethical and financial implications were not explored at all. Social Services were mentioned rather dismissively, although the reality of this is that this costly package would prevent others receiving care. Sadly the withdrawal of a social work presence from most hospitals except for assessing care has meant that the holistic view of an issue such as this is now marginalised, counsellors in my experience though helpful do not look at issues widely enough.

(Ruth Forrester)

 

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I was very disturbed listening to this morning's programme.  While I have sympathy for the woman's disabilities, her obsessional belief that having a child was the only thing that would make her life worthwhile was surely the very reason not to grant IVF on the NHS.  It is quite staggering that a private clinic could legally offer a 'prize' but I note that the NHS (or more accurately, we taxpayers) have had to incur the expenses of her complicated pregnancy and delivery. Bringing a child into the world is a huge responsibility and one that many people do not take sufficiently seriously.  This unfortunate little girl will be disadvantaged at every level: risk of severe disability herself: single parent, disabled parent. Those of us who are responsible parents are only too well aware of the overwhelming pressures, particularly in the first year of the child's life.  Also, back to the cost - and who is going to be paying for all the extra care and support this woman will require in bringing up her child without its father?  No doubt, we, the long suffering taxpayers. NHS and social service funding should be primarily for those in need, rather than a lifestyle choice.

(Wendy Attridge)

 

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I listened with interest to the programme this morning.  I had just had family members to stay with me for a week, and the adults among us had talked, as always, about these problems, as this dilemma reflects many aspects of the concerns in our family.  I am 67 years old.  My younger sister was born with a genetic disorder, at a time when less (nothing?) was understood about her condition and it was not diagnosed until her third child was born with the same symptoms, and my sister was in her forties.  The syndrome is called Di George Syndrome and involves a chromosome deletion and carries a 50% chance of being passed on to offspring. It is not appropriate to go into all the details.  Suffice it to say that I am now looking at the third generation of children, many of whom have been damaged in their upbringing by my sister’s inability to care for her children.  Her third child has the syndrome herself and has it much worse than my sister and will never be able to function independently.  Your team of experts were admirable in every respect, and the ethical dilemma facing them was horrendous and was not posed by my sister, who had no problem with fertility, so her conceptions were normal and no-one had to make the decisions your team had to face.  However, I feel the need to say that you cannot foresee the long term consequences of the planned conception of a child who may be handicapped to a mother who is handicapped.  Everyone in the family is affected for all their lives.  My story does not have a happy ending: my own mother’s life was blighted by guilt (not knowing whether she had inadvertently caused the handicap), my sister always struggled with so many aspects of life (educational, social, communication, dealing with money).  Most importantly her  three children all had a very unhappy childhood, and that involves a cycle of deprivation that seems unending.  I can see the third generation of problems coming along.  My sister was born into a middle class family, with resources (my sister went to a private school in the belief that her developmental delay would be helped).  But she has been unable to function socially, and unable to care adequately for her children in spite of the best efforts of my parents, myself and, crucially, of social services, who have provided immense resources to support two generations of family dysfunction, and it seems likely the cycle will continue.  At the time of my sister’s birth, nothing could have changed these events from unfolding.  Now we can intervene. With the best will in the world, you cannot foresee the long term future for an unborn child and her offspring.  We cannot always have what we want, resources are limited for the state and the family.  It is a horrendous decision for professionals to have to make, but as a family member, my decision would have been different.

(Sarah Campbell)

 

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As ever, a hugely interesting programme, very well and objectively presented. But I am left with a bleak and sad feeling of Rosemary's utter selfishness. She said herself at one point after a serious blip in the pregnancy that she 'now realised just what she was doing', and I wonder if enough had been done to talk to her about the purely selfish aspect of her wanting a baby. Was she a sort of experimental challenge to the medical profession? Her gynaecologist said openly that she was relieved to be free of the case. Rosemary's so-called partner has departed. Rosemary is happy. But what about the little girl? I feel that Rosemary's difficult and sad life and disabilities seemed to make her and all around her think that she was more entitled to try because she deserved some sort of life compensation. I find this case a very distressing example of the huge blindness some individuals have to the wider and longer term results of their desires and actions, and humanity's growing feeling of "it's my human right" and the devil take the hindmost. Very, very sad.

(Janet Skea)

 

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I'm afraid that I found this programme very irresponsible. You discussed the ethical issues raised by Ehlers Danlos Syndrome without once saying that there are many types of EDS and that this life threatening form is very rare. Most people live with the non-vascular type without any problems, many never becoming aware that they have it. My teenage daughter and I have Ehlers-Danlos. Had she heard this programme she would have been absolutely terrified. I fear that one of her friends is likely to have heard it and will discuss it with her. It would have been very easy to include a line in the script or from one of the doctors or geneticists to say exactly what form of EDS this woman has. Could you please ensure that greater care is taken in future when discussing medical conditions.

(Fiona McLean)

 

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Fascinating programme!!!!  BUT ....Should not the ethics committee have considered three further important aspects, which I did not hear any mention of during the program.

1. The emotional cost to her parents and family, which Rosemary has not apparently taken into account.

2. The potential “cost” to any baby (in terms of future responsibility to care of the mother and also   potential disability of the child), just to satisfy her own selfish “needs”.

3. The cost to society in providing the huge extra medical and on-going care costs of helping bring up the baby,  whether disabled or not.

It would seem to me that cost should / must come into the equation somewhere in today’s economic climate.  Can society afford to spend significant resources in this non-essential way when the NHS is struggling to provide adequate lifesaving facilities in A&E departments?

(Mike)

 

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Thanks for the programme this morning - most interesting. Why does profit-making Private Medicine, not pick up the consequential costs of their actions?? The Private consultant said that the "free" fertility treatment took profit out of the question, but I bet their reaction would have been totally different if they had had to consider picking up the consequential costs of the pregnancy that they might create. Did the Private Medicine pay for the "two weeks of intensive care", the NHS nurses, admin staff, and doctors during the pregnancy?? Of course not! But why not?? The Private Medicine Market should be made to pick up the costs of their actions. Currently Private Medicine takes the profit, we take the costs/losses. Win/win for the Private Medicine Market! We need an "Ethics Committee" discussion on the actions/responsibilities of Private Medicine.

(Nick)

 

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Very hard to listen to - my daughter with a rare variant of Kallmann's Syndrome is 37 weeks pregnant following treatment at the University of Colorado Centre for Advanced Reproductive Medicine - we, her parents had  a strong preference for adoption to avoid the risk of passing on the condition, but none-the-less have funded the treatment. Fortunately she is in a strong and happy marriage. Are we  morally responsible if anything goes wrong, we ask ourselves endlessly. Very moving programme with an excellent level of discussion.

(Joan Lawrence)

 

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I refer to this morning’s programme about Rosemary and her ‘need’ to have a baby. Rosemary is a disgrace. She acted throughout with total selfishness. Whether this was caused by hormones or her natural inclinations, I have no idea. But her displayed massive entitlement syndrome, verging on solipsism, was plain for all to see. She ignored completely the possible lifelong consequences for her child due to genetically inherited medical conditions; she ignored the obviously gigantic cost to the tax payer who had to fund her massive medical bill; she ignored the fact that there are already far too many people on this planet. And on top of that, she required that the birth be caught on film, so that she could revel for ever more in the culmination of her obsessive project! Doesn’t anyone connected with this venture realise that, apart from ‘feelings’, we also have an intellect and wider responsibilities that should inform our decision-making? I feel like having some cosmetic surgery – why shouldn’t I get that on the NHS? Why is that ethically different from Rosemary? At least my cosmetic surgery wouldn’t make worse the world’s biggest problem – human overpopulation. People such as Rosemary should not be indulged any longer.

(James Thomson, Bedford)

 

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I have listened with some astonishment to the obsession of Rosemary to "have a baby". There was no mention whatsoever of the fact that this "baby" or "child" represents the process of creating a new man or woman, and to question whether this is the optimum or even a desirable way to go about it. Where are your brains this morning? By far the most important criterion is the ability of the prospective parents to provide the support that this new person will need until it becomes independent and can fend for itself. Rosemary could have survived perfectly well without a "baby". I dread to think of the potential for damaging this infant, not least treating it as a domestic pet.

(James Carey, aged 80)

 

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The overwhelming question in this discussion is who is paying for Rosemary's choice.  Whilst we can admire her tenacity and wish, who pays for all the healthcare and extra resources.  It is simply not a responsible decision to even feed.

(Kirsty)

 

 

ENDS

Programme Transcript

Downloaded from www.bbc.co.uk/radio4 

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

 

 

INSIDE THE ETHICS COMMITTEE – Assisted Conception

 

TX:  08.08.13 

 

PRESENTER:  JOAN BAKEWELL

 

PRODUCER: BETH EASTWOOD

 

 

Bakewell

Assisted reproduction is now part of the NHS armoury to help women who are infertile.  But what happens when you have multiple disabilities and are driven by your longing to have a child:  who decides what risks to take?

 

Welcome to Inside the Ethics Committee.

 

This is the story of Rosemary:  As a child she was very bendy and flexible, she bruised easily and often dislocated her joints.  By her teens her condition meant she needed braces to walk. She was finally diagnosed in her 20s - she has Ehlers-Danlos Syndrome.   Despite being in a lot of pain Rosemary always pursued her love of sport, driving herself to ever harder challenges like competitive swimming.

 

Rosemary

The lifeguard walked along the poolside with me, I think he was worried I was going to drown.  When I got out he said what are you doing this for and I said I’m determined to raise money for charity and to do this event.  And I just knew that I could do it if I worked hard enough and sure enough by the end of the year I was swimming 5,000 metres, I was spotted by a local coach and from there I was picked up regionally and then nationally and I went on to win a silver medal at the Paralympic Games.

 

Bakewell

This amazing achievement in the year 2000 was soon overshadowed by her ailing health.  Scans revealed scoliosis, a twisting of her spine, which dramatically worsened over the next five years.

Rosemary

It’s unusual for a spine to collapse to the extent it did and the result was that my ribcage was practically sitting on my pelvis on the right hand side.  I was very floppy basically.  As somebody said – Weebles wobble but they don’t fall over – but I did.

 

Bakewell

Eight years ago, Rosemary had two metal rods fitted in her spine to support and straighten it.  The operation was considered extremely risky, and  triggered a cascade of further health problems - spinal cord damage, blood clots in her lungs, inflammation of her brain, and eventually, intestinal failure. 

 

Five years after her surgery, Rosemary’s health problems are at last under control.  She is now stabilised – a full time wheelchair user and her breathing is impaired.  She receives her nutrition via a tube fed directly into her bloodstream and she empties her bowels into a bag attached to the small intestine.

 

Rosemary

It’s had a huge impact on my life.  Setting up the lines, taking them down, managing the meds coming in and out.  Working round my sleep patterns.  I’ve not been able to hold a nine to five job.  There were times when I wondered whether life was worth living.  I’m always the sort of person that I’ve got to be striving for the next goal and I didn’t have one and the thing that I felt was missing the most was a child.  You don’t have a child to give you a reason to live but equally there probably isn’t any drive stronger to make you fight and that I decided was going to be my next goal.

 

Bakewell

Rosemary had spoken to doctors about this in the past and had always been discouraged.  But now she’s more determined.  She’s in the early stages of a relationship and, at 36, with irregular periods, she’s concerned about her fertility.  Rosemary is referred by her GP to a fertility doctor.

 

Fertility Expert

She had come obviously with a very long GP referral letter that referred to all of her medical problems.  We arranged, at that point, for her to have fertility potential testing in the form of a blood test.  We also spoke about her extensive medical problems and how this might impact on our ability to be able to offer fertility treatment but also on her ability to safely carry a pregnancy and safely deliver a baby.

 

Bakewell

The fertility doctor refers Rosemary on to various specialists at the hospital including an obstetrician who treats women with high risk pregnancies: they enumerate the risks.

 

High Risk Doctor

I saw a very pleasant smile as I entered into the room and she was clearly very aware of her complex medical problems and was equally quite willing to explore the options, risks.  I’m here looking at the set of notes and the Ehlers-Danlos Syndrome in particular had potentially increased risk for her to go into possible early labour and some women will have increased bleeding after they’ve delivered.

 

Fertility Expert

She’d had a previous history of blood clots and blood clots are more common in pregnancy which could in themselves be fatal.

 

High Risk Doctor

She is on a wheelchair and the potential risks from restricted mobility and increased risks of having clots in her legs and lungs.

 

Bakewell

If Rosemary is to have IVF treatment the procedure will boost the oestrogen level in her body which will raise her risk of clots even further.

 

High Risk Doctor

She has also got a significant hormone deficiency from her spinal operation.  She has got problems with her bowels requiring her nutrition to be given through a neckline.

 

Bakewell

This could have serious implications for both Rosemary and a potential foetus.

 

Fertility Expert

If you have a line inserted for feeding then there’s a risk of catastrophic infection that involves the whole body and therefore the severe risk that baby will become infected and indeed that baby may die because of that.  She’d also – because of her extensive bowel surgery – was having problems with absorption of nutrients and clearly that brings in nutritional risks for her and the baby.

 

Bakewell

And that’s not all.

 

High Risk Doctor

There were issues of advancing pregnancy causing difficulties with breathing as the pregnancy progresses and therefore an impact on the baby.  She was on several medications which could potentially cross the placenta and have an effect on the baby too.  We were very conscious that she could get very unwell through the pregnancy and we may well end up delivering her early.

 

Bakewell

While hospitals look after women with complex problems who are already pregnant, enabling a woman like Rosemary to become pregnant is a challenge of a different order. But Rosemary herself is adamant she wants to take the risk - even if she loses the baby.

 

Rosemary

I would be devastated but I had answered that question – could I carry a child of my own?  And whilst you might say that’s not my right to put a child at risk I believe that I could be well enough to support it in pregnancy to minimise those risks.

 

Bakewell

But there’s something more:  Rosemary’s condition - Elhers-Danlos Syndrome - is genetic, so Rosemary’s child could inherit it.  Sometimes it’s possible to screen embryos outside the womb, and only implant one that doesn’t carry the mutation.  The genetics specialist.

 

Genetic specialist

If there is a genetic defect specifically found that is causing the problem we could go back to the parents with a view of testing for that particular gene defect.  However, in this case it is not possible.  So if she goes on to have a child there is a 50/50 chance of passing it on.

 

Bakewell

From a genetic point of view, the decision of whether to have a child is up to Rosemary.  It’s a difficult decision.

 

Rosemary

If I had a child affected by my condition and then maybe worse affected I would be heartbroken.  But equally if I chose not to have a child as a result was I saying that I wouldn’t have wanted to have been born?  And I definitely don’t regret being born and I think that I have a good quality of life and I didn’t think it was an unfair risk on the child.

 

Bakewell

As part of the process, the fertility team must also carry out a Welfare of the Child Assessment.

 

Fertility Expert

It’s very important that we’ve carried out this Welfare of the Child assessment to make sure that we are not producing free fertility treatment to a child that is at high risk of problems, is a high risk of being motherless or parentless because of the medical problems of the mother or the father.

 

Bakewell

The Fertility counsellor meets Rosemary to discuss the implications for herself and any future child.

 

Counsellor

One of the worries was her physical condition – she’s in a wheelchair, she has problems with limbs and joints, she may drop the baby.

 

Bakewell

Rosemary feels she is prepared for every eventuality.

 

Rosemary

I won’t pick my child up at arms’ length or I won’t swing my child round and I will make sure that I’m in a padded area if I’m trying to transfer the child and I think there’s a chance that my grip might not be good enough.

 

Counsellor

She also has a condition that causes her to fall asleep, almost in an instant, which means that she can never be left alone without the baby being at risk – she could fall asleep, the baby could roll off her – and it’s going to be safe it needs somebody else there.

 

Rosemary

When I looked online and I read other mothers’ experiences they said there is no stronger reason to wake up when you’ve got a child who is depending on you and that made me think I will work round my sleep disorder to give my child a good quality of life.

 

Counsellor

Rosemary needs care, so we’re going to need additional carers for any child.  What kind of lifestyle is that child going to have?  Is it going to grow up and be a carer for its mum?  Rosemary said that she had a partner who had four children – they weren’t living together but we were considering the effect on a man with four children who then had a partner with disabilities and then potentially a child that would need an awful lot of input.  So we were trying to really really be fair but at the same time trying to be safe.

 

Bakewell

Rosemary emphasises the things in her favour. 

 

Rosemary

Through my parents I had a house without a mortgage, I had the possibility of bringing in lodgers for extra money.  Of course I had my partner, although it was still very early stages.  I wouldn’t be asking these questions if I didn’t think I could offer that child a very good quality of life.

 

Bakewell

The decision hangs in the balance. Then the fertility counsellor gives Rosemary her blood test result.  Her fertility level is at the lower end of the spectrum. 

 

Rosemary

That just shook me to the core, I put the phone down and I sobbed inconsolably.  I remember my dad coming in and he just said – but you knew that would be the case.

 

Bakewell

Rosemary has tried for a year to conceive naturally, without success. She feels IVF is now her best chance.  But she also has a fibroid in her womb, a potential obstacle to becoming pregnant. So she asks the gynaecologist at the hospital to remove it, which makes him think twice.

 

Gynaecologist

I’ve already done this procedure for her years past, in relation to a problem with her periods and the question for me was – can I facilitate the same procedure now knowing that this will be a first step towards a pregnancy that can carry risk?  So it was very difficult.  Doing the opposite or refusing to help in that way seemed to me just too harsh.

 

Bakewell

The gynaecologist removes Rosemary’s fibroid under general anaesthetic.  The operation though risky goes well.

 

If Rosemary is offered IVF the fertility team is aware that because of Rosemary’s complex problems, she will need another general anaesthetic. Collecting eggs for IVF is usually done under light sedation. The fertility team is apprehensive about anything heavier, especially as the intensive care facility is far away across the hospital.  This is just one of many risks that worry the team.  Rosemary, however, remains committed. 

 

Rosemary

I felt it was my risk to take.  There’s almost a feeling that pregnancy is a right.  I expected that if I couldn’t get pregnant that a doctor should be able to help me get pregnant.

 

Bakewell

The fertility team need to decide - should they help Rosemary get pregnant?

 

So let’s now consult our panel of experts. They are:

 

Deborah Bowman, Professor of Ethics and Law at St George’s University London;  Kaliya Franklin, a disability campaigner who, like Rosemary, has Elhor Danlos Syndrome and Alison Murdoch, Gynaecologist and Professor of Reproductive Medicine and Head of the Fertility Centre at Newcastle Hospital.

 

Let’s start at the very beginning.  Rosemary’s asking for assisted conception on the NHS, do all patients have that as a right Alison?

 

Murdoch

The NICE guidelines say that people who need IVF should be eligible to have three goes at treatment funded by the NHS but that is not widely provided throughout the UK – about 70% of the IVF in the UK is provided in the private sector not the NHS.

 

Bakewell

Are there conditions then, sort of age, partner status, things of that kind?

 

Murdoch

There are some guidelines in terms of female age but nothing that would look at the issues as expressed by Rosemary, there are much broader issues – some of those are covered by the Human Fertilisation Embryology Act, which takes into account how we assess patients and issues such like the welfare of the child.

 

Bakewell

Now what exactly is that Deborah?

 

Bowman

The welfare of the child assessment is the requirement that the clinical team considers the future welfare of any child that might be born.  And it is unusual because what you’re effectively asking clinicians to do is to consider the best interests of somebody that doesn’t yet exist.  It’s changed over the years to reflect the demographic, so originally there were things about the need of that child for a father, now it’s determined with regard to a concept of supportive parenting.

 

Bakewell

So Alison how is that made, what takes place?

 

Murdoch

In practical terms the assessment that we do in clinics is extremely difficult, if not impossible because we’ve been asked to say is the outcome for this child so bad that a child should never have been born in the first place.  And despite all Rosemary’s problems she still feels the quality of her life was good.

 

Bakewell

So you’re saying that the welfare of the child assessment is almost useless?

 

Murdoch

It was put in when the act was brought out in 1990 because there were concerns about the idea that single women would have a child and there was a need for a father.  We’ve moved way beyond that now but it has been left in the act because there is a feeling that we should be some sort of gatekeeper.

 

Bakewell

Well let’s talk to Kalyia, because you have the same condition as Rosemary.  How does it affect you?

 

Franklin

Ehlers-Danlos Syndrome is a collagen disorder, so there’s something wrong with the building blocks of our body.  And Rosemary used the perfect phrase – Weebles wobble but they don’t fall down.  Because we can be very floppy and a bit jerky in our movements, like marionettes.  So you live with for most of us near constant level of dislocations.

 

Bakewell

Does the condition worsen with age?

 

Franklin

Ehlers-Danlos Syndrome is very variable but certainly as we age our joints become looser at the same time as having the kind of changes that most people get as they age.

 

Bakewell

And is it part of your daily life to be conscious of it – I mean you arrived in a wheelchair but you got up and walked around, I’ve seen you standing?

 

Franklin

My mobility is very limited but it affects everything in life really.  I’m terrible for putting my fingers in gas flames and boiling water because I can’t feel the temperature.  We’ve got a bowl sitting here because I unpredictably vomit in embarrassing situations.  For me I live with the risk of my airway collapsing…

 

Bakewell

Unexpectedly, it just happens?

 

Franklin

It just does and decides to upset everyone around me who get far more bothered than I am really.

 

Bakewell

So you can deal with it, you can manage it?

 

Franklin

I can accept that that can be life threatening and that that’s just the way it is.  And then my spine is extremely unstable, so I understand in a different way than the average person does that being paralysed from the neck down may well be a part of my future.  But they are just facts of life and before getting pregnant I would consider how those issues impact on your ability to rear a child.

 

Bakewell

Because you see we’ve heard that Rosemary’s health problems make assisted conception very risky but she says she’s prepared to take those risks, so what do you make of that?

 

Franklin

I think that the risk is particularly interesting because Rosemary and other disabled people understand risk in a very different way from people who aren’t disabled and particularly from clinicians because we live with that risk as part of our everyday life, so we learn to accept that and deal with it.

 

Bakewell

Let me just put to you Alison – this different conception of risk that Kaylia’s just explained, do you experience that different perception of risk?

 

Murdoch

The risk is taken by the person that’s going to have the treatment, it’s that personal drive that she’s got that was perhaps blinding her to some of the risks, it’s the fact she’s only in an early relationship, she’s not with a partner she’s living with, we don’t quite know what her family support is – there’s all these other issues that make it a more complicated story than just someone with a syndrome that in itself is a problem but is not an overwhelming problem.

 

Bakewell

Do you think she can begin to assess the risk if she is so focused on having a child Deborah?

 

Bowman

It’s interesting because I hear that too but I don’t conceptualise that as that unusual for many, many women who wake up one day with this compulsion to have a baby.  So yeah I’m not sure about that.

 

Bakewell

Kaylia?

 

Franklin

I think that’s the most natural feeling in the world for her to have.  It doesn’t necessarily mean that she can successfully get through a pregnancy and have a baby but that desire to have a baby of your own is fundamental.

 

Bakewell

Right, well now let me put this to you that if the team help Rosemary get pregnant they will be putting her in a position of risk she wasn’t in before.  Is that common in medicine?

 

Murdoch

Most of what we do in medical practice is we do the things that the patients’ require us to do.  We have to make sure that the patient understands the benefit of the procedures and the risks that they take.  It is slightly unusual that in this particular circumstance society takes some view in the issue as well.

 

Bakewell

And where does society stand about the risks of inheriting illness Kaylia?

 

Franklin

I think that’s very much a consideration for society, it may not be for the disabled people because we tend to have very different views about our quality of life than people who aren’t disabled.

 

Bakewell

And this is a genetic illness, to what extent should that play into these decisions?

 

Franklin

The child has a 50/50 chance of getting the genes but that’s not a guarantee that the child will become a disabled person because unlike Rosemary and myself all the parents I know of children with EDS are mitigating additional damage that people like myself and Rosemary have had to our joints by not being diagnosed, so as children we would say things like my leg hurts from gymnastics and the answer would be well it’s fine just carry on.

 

Bakewell

Alison, have you turned down women who’ve come to you asking for IVF?

 

Murdoch

There are many people who might have come who will have decided as a result of the discussions that we’ve had that it is better not to go down the line of IVF.  There are many cases where we think I would not like to be your baby but that’s not my decision to decide that, it’s them that want the baby not me.  Very, very rarely would you turn someone down.

 

Bakewell

Is there a line beyond which you won’t go – I mean a heavily drug addicted woman?

 

Murdoch

I wouldn’t turn someone down for drug addiction on their own but it’s very rare that someone would have a drug addiction and that be their only problem.  And it’s usually a combination of issues that make you think maybe this is not the right way down.

 

Bakewell

But you know that there is a line somewhere?

 

Murdoch

I think there is a line somewhere and they’re not always the obvious ones.  We had a patient who achieved a pregnancy with IVF and then decided she didn’t want the baby, had the pregnancy terminated and then she came back for IVF again and I said no.

 

Bakewell

Deborah, what is the ethical landscape here about women wanting to be pregnant?

 

Bowman

I mean I think it’s partly about where the line is drawn but also who draws the line and with what information because there isn’t anything magical in medical school that gives you the facility to sit in judgement and be wise about other people’s lives.  There have been examples in the field, particularly when the field was relatively new, so for example there were cases involving women who were HIV positive at a time when that was a rather different diagnosis.  And different clinicians felt very differently.

 

Bakewell

Alison.

 

Murdoch

It’s a slightly dangerous thing to take someone who is as driven by a very clear desire to have a child as Rosemary is and just say no because you’re putting their back against the wall, she has a major, major problem in addition to her physical problems which is this innate desire to reproduce and have a baby. 

 

Bakewell

Deborah.

 

Bowman

And I think we have to be really careful because the welfare of the child assumes, requires that of course you want a child, that you desire a child but will also say you mustn’t want that child too much because that’s somehow pathological.  And the question is a values one of how that desire to have a child is conceptualised.  And I think Alison’s point about unpacking that desire and exploring it with her is fundamental to this.

 

Bakewell

Well let’s consider that you are the ethics committee and the question comes to you, what advice would you give the fertility team whether to offer Rosemary assisted conception, or not?  I need an absolute answer.  Alison.

 

Murdoch

I think it would be better that she did not have IVF but I also think it would be better if she’s not turned down because I think that negative response would not help her, we need to work with her to try and work her through her issues.  I’m not yet totally convinced that IVF is what she needs, I know this sounds slightly bizarre but she’s still within reproduction age, she’s not been trying for very long, she’s not living with her partner.  If you look at natural conception 80% of couples will conceive within one year of trying, 90% within two years, so maybe even IVF is a step too far for her at this stage.

 

Bakewell

Deborah.

 

Bowman

I disagree, I would support her having IVF but again it wouldn’t be a blanket yes let’s go ahead, that would be with a caveat about exploring whether it’s the right thing now and why but also that it’s not just about Rosemary understanding the risks, I think the whole clinical team might want to think about their conceptualisation of risk.  So we heard some very particular ways of conceptualising how she would care for the child, which I think were questionable.

 

Bakewell

Kaylia, what would you advise?

 

Franklin

I’m certainly not troubled by the welfare of the child, I think that this will be a very loved child if it does happen and that some of the issues raised about dropping the baby were issues that I’ve not heard in three decades and hoped not to because she is an intelligent woman and she’s perfectly capable of finding other ways round those practical issues.  But I am very, very concerned about the risk of infection from her feeding line and that isn’t a standard feature in women with Ehlers-Danlos and I think that that is a separate issue from the disability rights issue surrounding this.

 

Bakewell

So your advice?

 

Franklin

It’s Rosemary’s choice if she understands the risks but I don’t think for myself that I would decide on IVF.

 

Bakewell

Thank you very much.

 

So should the fertility team help Rosemary get pregnant or not?  After consulting widely the decision is made not to offer Rosemary treatment.  The fertility counsellor explains the decision.

 

Counsellor

There was a lot of discussion about this and we were really sympathetic to the awful pain that she was in but equally we really did not feel that it would be safe for her to a. have treatment, the treatment itself could kill her and then b. to carry a pregnancy, which could kill her and any potential child.

 

Bakewell

Even though the team feel they can’t offer Rosemary treatment, the gynaecologist at the hospital says more could have been done to help.

 

Gynaecologist

A referral is a way of dealing with this, so if I cannot do a procedure for whatever reason I’m entitled and obliged in many ways to say that my colleague in the other hospital has the facility.  As opposed to a slammed door approach.

 

Rosemary

I was left with a fertility result that meant that it was highly unlikely for me to become pregnant and a report that said even if you wanted to try against the odds we wouldn’t be able to help you.

 

Bakewell

Now 38, Rosemary is desperate.  She goes online and finds that private clinics are not cheap.

 

Rosemary

I looked at possibly going abroad and trying to cut the costs and came across a posting by a mother who’d said I won my baby, in effect, in a competition.  And I just thought I’ve got to try.

 

Bakewell

Rosemary has discovered a competition to win a round of IVF:  she decides to enter. She meets the criteria – she is under 42, with no previous live births and under two previous unsuccessful IVF cycles.  A doctor at the private clinic that’s offering the prize explains how the competition works. People apply via Infertility Network UK, a charity for infertile couples. 

 

Private Clinic Doctor

As a gesture of goodwill and to help support their fight to increase NHS provision of cycles the clinical director of the unit started a competition approximately four years ago and it’s drawn at random out of a hat.  In this particular year Rosemary, along with one other lady, happened to actually win the prize and these two particular ladies were probably the most high risk for some considerable time.

 

Rosemary

It took a second to sink in and then it was just like I’ve been told I’ve won the lottery, I was just screaming.  Things like that don’t happen to people like me.

 

Private Clinic Doctor

When we first learnt she’d won the competition and we saw her in clinic we wanted to ensure that it was safe to treat her, that there were no welfare for the child issues, so we contacted her GP who sent us an extensive letter outlining her history, contacted the other medical clinicians involved in her care to find out their feeling on her pregnancy risk.

 

Bakewell

The fertility doctor reads all the correspondence - the general view is that the risks are high.

 

Private Clinic Doctor

When we’re seeking advice from several different clinicians we’re never going to get everybody singing from the same hymn sheet.  The main increased level of risk with her, above and beyond anybody else, was the anaesthetic risk of the procedure itself.  We were all very aware of the increased level of complication that she ran both in having treatment and also in pregnancy and we had to seriously consider whether we thought it was prudent to treat her or not.

 

Bakewell

Well let’s go back to the expert panel to see what they make of that.  Well Rosemary’s now in a private clinic, she’s won a round of IVF in a competition, what do you make of that Alison?

 

Murdoch

The ethical issues are beyond Rosemary to be honest here.  Either we believe, as I do, in an NHS in which treatment is provided at source irrespective of ability to pay or you work in the private sector.  Unfortunately if you work in the private sector you then get into a competitive market and it is not surprising therefore that practices such as having lotteries will surface.  I don’t like it but that’s the consequence if you move things like fertility treatment into the private sector as we have in the UK.

 

Bakewell

Deborah, there’s no legal issue here?

Bowman

I mean there would be if they weren’t doing all the proper things subsequently in terms of assessing risk etc. and welfare of the child assessments.  But I couldn’t agree with Alison more, I mean I think is a really unfortunate and unhappy way to go about providing treatment for anything.

 

Bakewell

Why is that specifically?

 

Bowman

Because you are effectively not providing treatment on the basis of need, you’re not providing equal access…

 

Bakewell

But she does need…

 

Bowman

She needs it but you’re not making those sorts of judgements within the public sector, you’re making a judgement after somebody has already won – I mean what would have happened for example if they then decided to back out, does it come down to terms and conditions rather than someone’s best interest?  That seems to me to be a significant value shift.

 

Bakewell

What do you make of it Kaylia?

 

Franklin

To me it seems a bit like win a baby, in adoption terms would you be able to point to a country and say I want that one, it’s a very odd way to go about.

 

Bakewell

What it does point up is of course the internet and the fact that you always go to the internet to see how people solve these problems, is it a danger Alison?

 

Murdoch

In this particular group of people, Rosemary’s a very good example of, they are very literate on the internet and they can get a huge amount of information, which is not different from lots of other areas of medical care.  She didn’t like the decision that she’d had in the first hospital there’s still the option of going for a second opinion within the NHS and I’m doubtful that the outcome would have been very different to be honest but it just seems slightly bizarre how she’s ended up in the private sector.

 

Bakewell

Well let’s go back to the story because we’ve got the private clinic now who decide to offer Rosemary assisted conception.

Private clinic doctor

I feel that Rosemary’s case would be at the absolute end.  We tend to get these because we have experience in treating them.  The anaesthetist felt that yes it would be complicated but no more complicated than various other anaesthetics they’d done in the past.  Having assessed the level of risk, having ensured that we had safeguards in place on medical grounds we didn’t feel it was reasonable to withhold treatment from her.  There is a feeling perhaps that the private sector take money from people without considering their medical history, so the fact that she was coming through for a cycle free of charge took that issue completely out of the picture.

 

Bakewell

IVF gives Rosemary the highest chance of a pregnancy so she is thrilled, but she has her eyes wide open.

 

Rosemary

If the worst happened and I died I was prepared to take that risk and of course I don’t want to die but I wouldn’t regret grabbing the chance to become pregnant and have a child of my own.

 

Private Clinic Doctor

There was the potential for impaired ability to care for a child, which is one of the questions that we have to ask, but she felt that she had the right support in place that this wouldn’t be a problem.  And taking everything into account we agreed with her.

 

Bakewell

Rosemary’s ovaries are stimulated by daily injections.  She is given a general anaesthetic, an intensive care bed is on standby. Nine eggs are collected from her ovaries of which six fertilise with her partner’s sperm.

 

Private Clinic Doctor

On day five on the day of embryo transfer she had two embryos of absolute top quality that were suitable for transfer and also potentially suitable for freezing.

 

Bakewell

Rosemary’s thrilled, but there’s a hitch. She wants both embryos transferred.  The doctor wants to transfer just one.

 

Rosemary

To be quite honest I was angry, all I could see was baby, increased chance of baby, two embryos and that was the answer I wanted.

 

Private Clinic Doctor

Persuading Rosemary to transfer one was a two pronged attack.  Firstly a medical attack – I think I ended up writing approximately two pages of notes about the potential risks in multiple pregnancy which is what I explained to her.  Tried to show her that actually transferring one at a time would give her a very similar chance of a baby as transferring two.

 

Rosemary

I had arguments about every one of their concerns should I end up with twins, because the bottom line was I desperately wanted to get pregnant pretty much at any cost.

 

Private Clinic Doctor

The second prong of the attack was the financial side of the transfer – we made it perfectly clear that we wouldn’t charge her for the use of this frozen embryo in the future if this first cycle was unsuccessful, just to ensure this wasn’t in any way shaping her decision.  And after some further counselling we came to a decision we were mutually happy with – to transfer one.

 

Rosemary

I was disappointed that I’d not maximised my chances of becoming pregnant but at least I had another option and I felt that they’d been very fair about it.

 

Private Clinic Doctor

I was incredibly relieved.  The transfer procedure was incredibly smooth, we always scan people to actually watch the embryo going into the right place.

 

Bakewell

And 10 days later a pregnancy test reveals the news Rosemary’s been hoping for.

 

Rosemary

The power of the emotion when you realise that that line is saying that you are pregnant.  I knew I’d be happy but I didn’t think I would completely lose the plot.  It was just incredible.

 

Bakewell

But her excitement is tempered by reactions from some family members who voiced their disapproval.

 

Rosemary

People like you shouldn’t get pregnant and another wrote to me and said I was very angry when you got pregnant and there was a real degree of judgement there and other people have just completely not got in touch.  It’s made me realise that there still is quite a lot of judgement around disabled people becoming pregnant and assumptions about how they will and won’t cope and whether society should afford them that right to become a parent.

 

Bakewell

The private clinic has done its job – providing IVF.  Now Rosemary’s back in the care of the NHS, and two months into her pregnancy, she’s concerned she might be having a miscarriage, but it is a false alarm and, with her obstetrician keeping a close eye, things progress well. 

 

Obstetrician

From when I first met her I thought oh there are so many things that could go wrong here, there are so many issues for the mum, issues for the baby – I’ve no idea where it will end.

 

Bakewell

But Rosemary and the baby continue to do well, until 25 weeks, when she starts to feel sick and develops a fever.  She is rushed to the hospital.

 

Rosemary

They were not sure what was going on.  While they were still sorting this out and trying to get me stable I went into respiratory failure.  All I could think of was I can’t breathe.

 

Obstetrician

We were initially struggling to get oxygen round her body and she required help with ventilation for that.

 

Bakewell

Rosemary is in intensive care.  She has septicaemia - a massive infection through her feeding line – one of the things her previous NHS doctors had feared would happen.

 

Obstetrician

When a mother is unwell, very unwell then the risk of a baby being unwell is obviously high as well and survival was the thing that I was worried about.  

 

Rosemary

And at that point I thought gosh have I done the right thing here?  And it brought it home to me just how much risk I’d taken.  But as I calmed down I thought one, I’m in the right place and two, you know what if I live and my baby dies then bottom line I still don’t regret trying.

 

Bakewell

And if the baby lives and she dies? Rosemary has made plans.

 

Rosemary

If I died I wasn’t convinced that my partner would be able to sufficiently to take care as a single dad, indeed he has other children from previous relationships.  So I wrote a will and in that will I named two families, both of whom had independently offered, without my asking to take my child on should I die.

 

Bakewell

The obstetrician is aware that Rosemary is a controversial patient.

 

Obstetrician

There were certainly colleagues who when they heard about her in various multidisciplinary meetings said she should never have been allowed to have assisted conception.  I was very glad that I met her when she was already pregnant and I’m very glad that I didn’t have to have the pre-pregnancy consultation which might have gone in a different direction.

 

Bakewell

Right well now I go back to our experts here.  Kaylia Franklin, Deborah Bowman and Alison Murdoch.  The life threatening complications which they had been warned about from the very start are now beginning to happen Alison, it’s terrible.

 

Murdoch

It’s terrible for everybody, particularly for Rosemary who is now at the risk of losing her baby.  Maybe she didn’t fully appreciate the implications of the complications that she was being told about and what actually might happen.

 

Bakewell

It’s interesting that one fertility team come to one conclusion and an entirely different team come to a different conclusion.  Deborah.

 

Bowman

Different clinics do make different decisions and some are much more conservative than others, particularly when it comes to these more value based judgements around welfare of the child etc.

 

Franklin

But I think it’s also to do with the level of experience and confidence of that team in handling high risk situations.  But I think the really, really crucial bit is Rosemary has lived with the risk of septicaemia and death ever since the complications from her surgery.  I don’t think either party could really entirely understand the others position completely.  When you live with a life threatening condition you know you’re going to die and the important bit is having grabbed every moment of life when you had that opportunity.  I suppose for Rosemary her ability to assess the risk to the unborn child is not that dissimilar from the way that clinicians are having to assess Rosemary’s view of her own risks, it’s about someone else not yourself.

 

Bakewell

Alison.

 

Murdoch

I think Rosemary was looking at the risks in a way that because she was fighting for treatment she was presenting yes of course I can cope with a baby, these are the ways I can cope with a baby.  But the stories then we hear once we find she’s pregnant is that she knows now that she might not survive, she’s written a will but named two families not one family – I find it slightly uncertain about what might happen to that child.  And then I’m very concerned about this partner – is he a father to the child, a child is going to be given to somebody else but he’s going to have legal responsibility?  These issues are now coming to the fore.

 

Bakewell

Kaylia.

 

Franklin

I think in terms of naming two families that’s an eminently sensible thing to do because Rosemary understands risk – if there is a need for them to then care for her child we don’t know that that family still has two parents because people get sick and they have accidents and that’s part of life.  I think Rosemary has thought through every aspect of rearing this child.

 

Bakewell

Deborah.

 

Bowman

The welfare of the child requires supportive parenting, it sounds to me like this is someone who’s thought hugely about what happens and everyone else is saying yes but.

 

Bakewell

Kaylia, what do you make of the hostility to her condition?

 

Franklin

I’m saddened but I’m not surprised.  Family hostility is not that unusual.  When someone with EDS and particularly their parents has been told for several decades that there’s nothing medically wrong, that their child needs psychiatric help I don’t think families every really recover from that.  But I think it also accounts for some of the determination inherent in people with EDS because our entire lives have been a battle, way before we were disabled.

 

Bakewell

And Alison you live surrounded by these dilemmas.

 

Murdoch

The consequences of the treatments that we provide are borne by the patients who have to live with the consequences for ever more.  And we have to make sure that they are fully aware and that’s the bit in this particular case that I have concerns about – is that there is such a drive that I’m not sure when she started she was fully aware of all those consequences.  Now we’re in a situation where she’s pregnant, you’re in a different scenario, in the same way if she got pregnant on her own without IVF, you have to pull out all the stops and give you every bit of support that she needs.

 

Bakewell

Well let’s go on to discover what happened.  After two weeks in intensive care, Rosemary and her baby have survived the infection. Things proceed smoothly, until 34 weeks.  Rosemary becomes breathless.  This time, the growing baby is affecting her already impaired ability to breathe.  She’s fitted with a mask to help her get oxygen to her and the baby.  The obstetrician wants the baby delivered under general anaesthetic, by caesarean, with an intensive care bed on standby.

 

Obstetrician

I was very anxious.  There were a large number of potential complications.  But also I really wanted things to go well for her.

 

Bakewell

Baby Maria was born at 35 weeks.  Rosemary was unconscious throughout but, as she requested, the team filmed the birth and placed Maria against her mother’s skin.

 

Obstetrician

I was hugely relieved when it was no longer my responsibility or when she was no longer my responsibility or the two of them were no longer my responsibility anymore.  I very rarely lose sleep over patients but I absolutely did with her.

 

Bakewell

And now we meet Maria…

 

Rosemary

Hello gorgeous.  Are you just waking up?  Come on.  Out you come.  Good girl.  Oh stretch – this is our latest thing, we’ve learnt how to have a nice big stretch when we wake up.

 

There you go. 

 

She’s feeding really well and gaining weight and we’re happy.  It’s hard to explain how much I adore her.

 

In a sense she’s actually helped me have even more of a reason to maximise my health because I want to be there for her and I want to do everything.  And there’s nothing so far that I haven’t been able to do.  I’ve thought carefully about how I’ve set up the environment for bathing her, feeding her, changing her and it works and she’s the best thing that’s ever happened in my life.

 

Bakewell

At the time of this recording in the spring, Maria was 19 weeks old.  Social services carried out an assessment of Rosemary’s situation and concluded that she is able to meet her daughter’s needs with the support of a mother’s help throughout the night and for part of each day.  She is no longer with Maria’s father, but he remains part of their lives.  While Rosemary has fulfilled her desire for a baby, she’s mindful of the fact that Maria may have inherited the condition she suffers from.

 

Rosemary

She looks so perfect and it breaks my heart to think that she might have those challenges ahead of her.  But I actually think that personality is more of a disabling condition than physical disability and I can already see that she’s got the attributes she needs to fight any challenge that comes her way, including her mum.

 

ENDS

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