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Ethical dilemmas

A baby to save a life

42 replies

shoodaknownbetter · 15/05/2024 13:31

Dear Mums,

20 months ago I met a woman we can call Livia. She has a brilliant mind and we started working on a project together. As we got to know each other it became clear she was in an abusive relationship, ending up frequently in hospital. She has 4 small children, the youngest with her then abusive partner (5 years old), another the unfortunate consequence of an ill-advised fling (7 years old) and twins, a result of IVF from her first marriage (12 years old). I was recently divorced and living alone, she is an incredible beauty in a distressing situation – one thing led to another.

I have 3 children: 2 in their early 20s and living away from home and my youngest is 17 living with her mother but with whom I have a close relationship.

In the new year of 2023 Livia’s situation at home had become dangerous, she was under constant attack. She had won a restraining order on her ex but he had weasled himself into a neighbour’s flat below hers and was terrorising her daily. The police were ineffective as he acted from the shadows and evaded detection. Not knowing what else to do, I invited her to come and live with me while she waited for the final court case to come up, from which we would expect him to receive a custodial sentence. The wheels turn slowly and we are still waiting.

In June 2023, after several months of pain in the head had turned to bleeding from the ears, (we had attributed this to one of the beatings), she was diagnosed with glioblastoma which is a grade IV brain tumour with no cure. It has a median survival time of 12 to 15 months and we are now in the 12th month post-diagnosis. She is 36 years old.

It was not possible to have surgery to resect her tumour due to its location, but since she was in a very poorly condition when she was diagnosed they did an emergency procedure to insert brachytherapy seeds in very high dosage around the tumour. This gave her a very rough and painful summer but was actually quite effective, reducing the tumour almost completely by October.

Unfortunately, it sprang back very quickly and by January she was very sick again with considerable regrowth. The medical team then put her on an aggressive mixture of proton therapy, radiotherapy and chemo. They continued with this until March this year and while initially successful it quickly became apparent that the tumour was becoming resistant and spreading.

So far, a bit unorthodox but fair enough - they threw everything they could think of at it. What is troubling me is the next bit:

In April, a new guy came on board, apparently an eminent research oncologist - he took control and advised to put her treatment on hold for a couple of weeks while he reviewed her case history and decided on the next course of action. He was alarmed at the sheer quantity of medicine and radiation they had been pumping into her and felt she could do with a rest. Again, so far so good, this felt quite reassuring until he came back with his conclusion.

After a couple of weeks, she had already started to show signs of an allergic reaction, a burning and itching and redness all over her body. The doctor took her bloods and sent her for further scans and after a few more days called with the results.

He concluded that she was now rejecting the chemo and radiotherapy and that further treatment would do more harm than good. He advised that there was nothing else that could be done. But then he came up with this - and this is what I am deeply troubled about:

He asked if she had conserved any of the umbilical cords from her previous pregnancies. When she confirmed that she had not, he said that was a pity because there are a lot of promising results coming from research into stem cells and that the only possible option left to her would be to get pregnant.

The idea would be to try to carry the pregnancy to term in order to harvest the stem cells from the umbilical cord after birth and then create some kind of culture which would re-code the dna and potentially fight off the tumour. I have researched the heck out of this and can't find anything other than some testing in mice which has extended their lives by a few months.

She initially rejected the idea, but as it has gradually dawned on her that the only alternative is to do nothing and let the tumour kill her, she has now latched onto it as her only hope.

The whole idea sounds to me like pure science fiction, apart from being incredibly unethical and with no demonstrable chance of success. I have also understood that the only scientific probability is that the pregnancy will energise the growth of the tumour.

On a personal level, this is tearing us apart. She is incredibly angry with me that I have questioned the idea when it’s the only thing left. She has been given to believe that I hold the power of life or death over her. I am close to 50, with 3 grown kids of my own and have only known her for less than 2 years. The last thing in the world I want is to have a baby, with her or anyone else. I would do this for her if I felt for a moment that it had a genuine chance of success - but as it stands I can only feel that it will add to her problems over the coming months and that even if its clinically successful it might only extend her life by a short time - leaving me as the single parent of a new-born.

She is aware that the chances of success are slim, but its all she's got. In her eyes, I am now the cure for her cancer and my hesitancy will lead to her certain death instead of a chance of life. She feels betrayed and abandoned even though I have agreed to go through with it. She feels that I am agreeing half heartedly and would rather she die than to risk having a child.

From my own perspective, our relationship has been a catalogue of trials and challenges which never gave the opportunity for anything positive to flourish for me. Having to live with and maintain her 4 (traumatised) children has been a massive burden, as well as looking after her through her severe illness as she declines in health. She has no extended family and mine is all in my home country, we have no support or help from anyone and all of the children’s fathers are entirely absent and play no part in their lives, financially or otherwise. In spite of all this, I have now become the bad guy who in her eyes is not totally committed to saving her life and giving her a happy future. It has now been one year since I have been able to travel home to see my elderly parents as she has nobody to look after her here. I have been much more distant from my own children than I should have been as I try to deal with all of this. My job requires me to travel to visit my customers frequently and I have been leaning on my colleagues to cover my back for a year while I can’t risk being away.

I see no future and can only feel they have sold her a vain hope which requires me to mortgage my life to support, even if it adds no realistic improvement for her chances of survival. Am I wrong and selfish to not want to go ahead with this? Have I allowed myself to get so deeply sucked into this nightmare that I now have a duty to see it through at the expense of my own future? Has my desire to do some good only led to making everything worse for everyone? What is the alternative? She has nowhere else to go and nobody else to turn to.

I don’t think there are any easy answers, but I would highly value your perspective, even if it's not what I want to hear.

Thank you

OP posts:
TokyoSushi · 15/05/2024 13:38

Do not have the baby, I would be astonished if it would do anything other than make things considerably worse.

Eyesopenwideawake · 15/05/2024 13:41

What an awful situation, my heart goes out to you both. I'm guessing you've seen this story in the last few days;

https://www.bbc.com/news/world-australia-69006713

It shows that there are other possible treatments for this type of cancer so the first thing would be to either raise the question with her current oncologist and/or try to talk to another specialist about the best options. It seems hugely irresponsible for him to suggest this course of action without taking any account of the family situation and the fate of the child. Look for second, third and as many opinions as are necessary but do NOT allow yourself to be blackmailed into this. Your life is just as important as hers.

Richard Scolyer

Richard Scolyer: Top doctor remains brain cancer-free after a year

Richard Scolyer has undergone a new treatment for glioblastoma, based on his own melanoma research.

https://www.bbc.com/news/world-australia-69006713

Kesio · 15/05/2024 13:42

TokyoSushi · 15/05/2024 13:38

Do not have the baby, I would be astonished if it would do anything other than make things considerably worse.

Indeed this

Isgooglebroken · 15/05/2024 13:42

Having lost my spouse to cancer, absolutely no way would we have had a baby just to harvest stem cells from the umbilical cord. Terrible idea. Whilst I understand her desperation, she is very wrong to put you in this position.

What is going to happen to her kids when she dies? She would be better to put her energy into sorting that than thrusting yet another half sibling on them in what is a horribly distressing time. It honestly sounds as if you don’t really have a relationship, you have just become trapped, I think you need to contact services in that country to have things in place for the children. How would you actually continue your job after their mum dies if they are just left for you to care for?

Whisperingsummerishere · 15/05/2024 13:43

Surely her body isn't well enough to sustain a healthy pregnancy anyway?

Whisperingsummerishere · 15/05/2024 13:44

Admit you had a vasectomy after your dc... . Then have one.

She is now not thinking logically. I had a brush with death last year and it plays tricks with your mind.
Ime.

spannered · 15/05/2024 13:52

This is definitely a 'thing'!

I had a baby last year and the midwives brought a third party that the hospital works with to my attention. Essentially you pay them and when you're in labour the hospital contact them - they come out to gather the umbilical chord/placenta etc after birth and then they take it away and store it (for an annual fee). Apparently there has been some success in using the cells to treat the baby or possibly parents. It would avoid the need to source a match if stem cells were ever required.

A family member is having treatment for cancer (not the same one) and I asked them to contact their consultant and ask if he could benefit from the cells, but they advised he couldn't. I didn't go ahead with it because I hadn't prepared for the cost beforehand (a few thousand I think!) but I would consider it with future children.

I think you're right to refuse this. It's not fair on anyone really!

TwigTheWonderKid · 15/05/2024 14:01

I have a very rare, essentially untreatable stage 4 cancer and as much as I want to live, what this doctor is proposing is utterly bonkers in every way and if I wSs offered a similar treatment there is no way I'd consider it.

I am so sorry you are in this situation; it must be impossible. What arrangements has she made for the children after her death?

nocoolnamesleft · 15/05/2024 14:02

But it's not a baby to save a life. It's a high risk pregnancy, with significant chance of the mum dying before term, to give a tiny chance of possibly somewhat prolonging a life. Some oncologists don't know when to stop. Some researchers push their pet projects because they know the information gained might save other lives a decade down the line.

Willtheraineverstop · 15/05/2024 14:02

If nothing else I think it's extremely unfair to bring a baby into this situation.

shoodaknownbetter · 15/05/2024 14:10

Isgooglebroken · 15/05/2024 13:42

Having lost my spouse to cancer, absolutely no way would we have had a baby just to harvest stem cells from the umbilical cord. Terrible idea. Whilst I understand her desperation, she is very wrong to put you in this position.

What is going to happen to her kids when she dies? She would be better to put her energy into sorting that than thrusting yet another half sibling on them in what is a horribly distressing time. It honestly sounds as if you don’t really have a relationship, you have just become trapped, I think you need to contact services in that country to have things in place for the children. How would you actually continue your job after their mum dies if they are just left for you to care for?

Thanks for your comment, I have had the conversation about what will happen with the kids. We are in Spain and unfortunately although they have a great medical service they don't have much in the way of care in the community. The expectation is that "family" steps in here, which is not an option in this case. They do have fathers so when push come to shove I will have to contact the authorities to take charge of that as I can't realistically take them on myself. You are right that I have become trapped and the relationship was never able to get beyond a rescue attempt. Unfortunately, the doctors have not been candid with her about her prognosis so she is still in denial about the reality, which makes any planning very difficult.

OP posts:
shoodaknownbetter · 15/05/2024 14:13

Whisperingsummerishere · 15/05/2024 13:43

Surely her body isn't well enough to sustain a healthy pregnancy anyway?

I think you are right. My oncologist friend in the UK (who is also bewildered by this suggestion) has told me that the ovaries are usually the first to suffer from chemo. So its unlikely she would be able to conceive let alone sustain a pregnancy. But as she sees it, what other hope has she got?

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shoodaknownbetter · 15/05/2024 14:14

Whisperingsummerishere · 15/05/2024 13:44

Admit you had a vasectomy after your dc... . Then have one.

She is now not thinking logically. I had a brush with death last year and it plays tricks with your mind.
Ime.

I have to admit, this has crossed my mind!

OP posts:
shoodaknownbetter · 15/05/2024 14:19

Eyesopenwideawake · 15/05/2024 13:41

What an awful situation, my heart goes out to you both. I'm guessing you've seen this story in the last few days;

https://www.bbc.com/news/world-australia-69006713

It shows that there are other possible treatments for this type of cancer so the first thing would be to either raise the question with her current oncologist and/or try to talk to another specialist about the best options. It seems hugely irresponsible for him to suggest this course of action without taking any account of the family situation and the fate of the child. Look for second, third and as many opinions as are necessary but do NOT allow yourself to be blackmailed into this. Your life is just as important as hers.

Thank you fir your kind words and the link. I had seen this as well as some other similar promising trials. Unfortunately, none of them have yet extended lives beyond a few months. With my luck, it would only extend hers long enough to leave me holding a baby.

OP posts:
shoodaknownbetter · 15/05/2024 14:21

TwigTheWonderKid · 15/05/2024 14:01

I have a very rare, essentially untreatable stage 4 cancer and as much as I want to live, what this doctor is proposing is utterly bonkers in every way and if I wSs offered a similar treatment there is no way I'd consider it.

I am so sorry you are in this situation; it must be impossible. What arrangements has she made for the children after her death?

Thank you for your kind words and I'm so sorry for your own situation. I wish you all the very best

OP posts:
shoodaknownbetter · 15/05/2024 14:25

nocoolnamesleft · 15/05/2024 14:02

But it's not a baby to save a life. It's a high risk pregnancy, with significant chance of the mum dying before term, to give a tiny chance of possibly somewhat prolonging a life. Some oncologists don't know when to stop. Some researchers push their pet projects because they know the information gained might save other lives a decade down the line.

I agree. I think it was maybe just a throwaway remark from the oncologist but she has grabbed onto it like her life depends on it. I think he was wrong to make the comment when there is very little evidence it could lead to anything positive

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Lovelyview · 15/05/2024 14:29

Were you present when she was advised to have a baby and harvest the stem cells? Because that sounds completely insane. I'm not a medical person but surely the fact that stem cell donation exists means if there is a treatment they can try, searching for a donor match would presumably be the first option. Could you speak to the consultant and find out what they actually advised her? You sound like an incredibly good person. Please don't try to have a child with her.

MonsteraMama · 15/05/2024 14:36

While stem cell treatments do exist they're very much in their infancy. Whatever would be produced from this experiment, because that's what it is, would almost definitely not benefit her but would be another rung on the ladder to maybe help people in the future.

She and the baby would purely be guinea pigs, she will die, and you will be left with a very young baby to raise alongside managing your grief, and managing the heavy emotions that will come with raising the child who failed to save your partner. Don't do that to a kid, it's not fair.

I'm very sorry, this is a sad and impossibly difficult situation, but you need to be the one who is sensible here even if it makes you the bad guy. She doesn't have the frame of mind to look at this rationally. You can't have a baby for this, it's cruel. Whatever you've agreed to do, un-agree.

PurplePansy05 · 15/05/2024 14:40

This suggestion from her Dr sounds unethical and irresponsible. She is already very ill, this is no time for a pregnancy. 4 children will be left without a mum soon, don't make it 5.

shoodaknownbetter · 15/05/2024 14:44

Lovelyview · 15/05/2024 14:29

Were you present when she was advised to have a baby and harvest the stem cells? Because that sounds completely insane. I'm not a medical person but surely the fact that stem cell donation exists means if there is a treatment they can try, searching for a donor match would presumably be the first option. Could you speak to the consultant and find out what they actually advised her? You sound like an incredibly good person. Please don't try to have a child with her.

No, I wasn't there when this was suggested and you're right to call this out. From the start a lot of the treatment has been veiled in secrecy as the first brachytherapy treatment was a clinical trial. They gave her enough to kill an elephant and clearly didn't expect her to survive it so there was very little left in writing. I guess they are now in the phase of using her to try out whatever they can while she's still standing.

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Coffeegincarbs · 15/05/2024 14:47

It's a highly distressing and challenging situation to be in but it's surely untenable for her to bring a healthy pregnancy to term in the time she may have left? She's desperate of course, anyone would be at the thought of leaving behind 4 DC, but what will happen to her DC when she passes? She surely ought to be focussing on plans for them, or is the plan for their DFs or you to have them?

My SIL had an oncologist who made unusual treatment suggestions when it was obvious that standard treatments were no longer effective. Having worked in cancer research many years ago I felt it was too little too late and sadly my SIL and I fell out over it (I had her health POA at that point but I revoked it as I could not agree with the medical advice she was being given). Whilst I understand patients who fear death will hang onto any hope from any source out of desperation to stay alive, there comes a time surely when pragmatism, comfort and quality of life must be of highest consideration.

In SILs case her consultant was investigated by the GMC after other families complained.

LookAtAllThoseRoses · 15/05/2024 14:48

I'm not even going to focus on the idea of her getting pregnant, which is clearly mad (and I would be very surprised if any reputable oncologist recommended it), but on the mess you find yourself in because of some kind of white knight syndrome, you are likely to find yourself de facto guardian to four young children whose mother is dying, and whose fathers are either uninvolved and/or violent? That's what I'd be giving my thoughts to.

IAmThe1AndOnly · 15/05/2024 14:49

He sounds like one of those charlatans who prey on the desperate, and who people start these “gofundme” accounts to raise money for iykwim.

At the end of the day Glioblastoma is incurable. She is going to die, the maximum she will likely live is another 5 years, but as the tumours are already progressing she’s likely to live for months rather than years.

I would just put your foot down and say no.

And in reality, is this a relationship you want to stay in? While it’s absolutely understandable that what she’s going through is horrendous, the reality is that you’re not obliged to stay.

sunflowerlover282 · 15/05/2024 14:54

What an awful situation for all involved but having a baby won't make things better. If the worst happens, there will be a young baby without their mother and you'll be left to care for them.

shoodaknownbetter · 15/05/2024 14:56

LookAtAllThoseRoses · 15/05/2024 14:48

I'm not even going to focus on the idea of her getting pregnant, which is clearly mad (and I would be very surprised if any reputable oncologist recommended it), but on the mess you find yourself in because of some kind of white knight syndrome, you are likely to find yourself de facto guardian to four young children whose mother is dying, and whose fathers are either uninvolved and/or violent? That's what I'd be giving my thoughts to.

I have a close friend in the UK who is an oncologist and has said that he would be struck off for even suggesting something like this. But I guess in the research field they have to take risks at some point to find a cure and she has no other choices left. But bringing a child into the world for an experiment that will almost certainly leave them motherless doesn't feel right. And I can't take that responsibility either.

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