A baby to save a life

[shoodaknownbetter]

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

This is surely a made up story ? I cannot believe any doctor in their right mode would suggest this .

OP, I don't want to be cruel but, gently, are you certain that all of this stuff is true?
I'm not denying that some people have more than their fair share of horrific things happen to them, but you have found yourself in the position of doing an awful lot for someone you don't really know in a very short time, and the suggestion that someone who is terminally ill and has already undergone chemo and radiation should just get pregnant and have a baby is outlandish. It makes my antennae twitch.

You are not cruel at all, I completely understand and would feel exactly the same if i weren't living through it

Absolutely this. Di bot do this, for your own sake, as well as the children's. As A PP said, she doesn't sound well bought to sustain a pregnancy. Some consultants are very bad at knowing when to stop.

I've heard of cases where parents have another child to be a bone marrow match, or similar, for a sick sibling. The baby has 2 well parents though and is a wanted addition to a family.

This is very different though. There are not 2 well parents. There's a, very likely, terminally ill parent and a parent who is older than the norm for having a newborn. The baby isn't really a wanted addition to the family. The poor child is just there to provide stem cells.

I am so sorry about this situation, but for the sake of the unborn baby, don't do it.

Were you in the meetings where this was suggested?

It's a terrible idea, as you know. She doesn't sound well enough to sustain a pregnancy that you aren't keen on anyway, and you could end up grieving her and your lost child while trying to support her kids, you, your job etc. It's too much. You sound lovely, but also pragmatic.

I have seriously wondered whether she made up the story about pregnancy being a possible route to a cure, but I don't think so. I do think it may have been a throwaway comment that she has taken too seriously and run away with. I'm not sure I can blame her for that

Imagine explaining to a 10 yo motherless child that actually they were the by product of a planned umbilical cord harvest.

I very much doubt that an oncologist would actively suggest getting pregnant, but I can see how that idea could form if told that stem cells could have helped.

The whole thing would be deeply unethical, given that it is so risky in any practical or emotional sense.

I'm really unsure about this story. I had a close relative die from glioblastoma. It's a fast-progressing, very aggressive cancer. Most people die within a year of diagnosis and quite a few don't survive the first few months. I can't imagine that with other treatment off the cards, there's much chance that she'd survive long enough to conceive and carry a child to term, let alone go through any subsequent treatment. Pregnancy usually speeds up tumour progression too. It seems utterly bonkers. Sorry.

She is incredibly strong, outwardly at least. Her medical team can't understand how she is still standing and, as you say, didn't expect her to last more than a few months. I think the fact that she has defied their expectations so far is feeding her belief that she has it in her to beat it. This also make me feel like I am giving her up for dead when she still thinks there's everything to fight for.

OP, people are always going to celebrate if they beat the Odds.

My SIL died from glioblastoma, and she had certain things she wanted to achieve before she died. And she lived five years post diagnosis. But it’s something like only 5% who do.

if this consultant told her she should get pregnant in order to harvest the cells, then he needs to be struck off.

But I suspect it’s more a case of his asking if she had saved the umbilical chords from previous pregnancies because if so she could have had the stem cells, and she’s taken that further in her head and imagined that if she had a baby now then she could save the cells.

Except there’s no chance of her having a baby.

And even if by some miracle she fell pregnant, she could deteriorate at any point during the pregnancy, including the latter stages, when not only she, but the baby would die as well.

And when treatments are suggested, they’re always suggested with prolonging life in mind.

There is no cure. Maybe in time there will be, it’s always hoped that there will be.

So having a baby to buy her a few more months (which tbh is likely to have the opposite effect) should be a no. Without question.

Sometimes you’ve got to be cruel to be kind.

Have you spoken to this doctor or are you getting the info from her as I have previously read about a similar thing which turned out to be a scam.

I wasn’t in that conversation no. But there has been no suggestion of money changing hands. As far as I know.

This makes no sense. Stem cells can turn into other cells. But they dont kill off cancer cells. What stem cell treatment are they even suggesting.

This is bogus - from the dictor, from her or from you.

And wtf has bleeding from the ears got to do with a glioblastima?

The conversation didn’t happen in the way that she has relayed it. No doctor, working under the loosest of ethical guidelines, would suggest such a thing. Sounds to me like a throwaway comment or a reference to stem cell therapy was simply twisted to suit the narrative. Therefore this is a non issue.

A significant issue you do have is being lumbered with a number of fatherless children on the death of your partner. I think you really need to decide on whether this is something you are comfortable with because if not, then provisions need to be put in place now for their future.