TFMR and organ donation (sensitive)

[MaidOfStars]

Sorry if the title is either too graphic or too vague, I struggled to word it appropriately.

I have found a reported story today, originally in the Metro but unfortunately, stemming from the DM. I can't find a better source, but here's the link for those who don't mind: Link

Basically, pregnant women with babies diagnosed with severe conditions incompatible with life - anencephaly was used as an example - will be "supported" to choose to carry the baby to term, so its organs can be used for donation.

A quote (for those who won't click the link): At the moment, doctors will not raise the issue of donation with expectant mothers first, but wait for the women to approach the NHS transplant service themselves. However, that could change. Mr Ahmad [transplant surgeon, Leeds] told The Mail on Sunday: 'There is a real potential for using these organs [and] we are going to discuss whether it is an option, somehow, to tell women in this situation, that organ donation is an option.'

The argument is pragmatic - so many children need organs and there may be some good to come from such pregnancies etc etc. But this has provoked a very visceral (negative) reaction in me.

Am I being unreasonable to say "No no no, this should never happen. No woman facing such a diagnosis for their unborn child should have to have this conversation"?

[KitKatCustard]

Not unreasonable at all. I can't see how this could ever be a reasonable choice to discuss with a woman or couple in such a distressing position.

[Samcro]

oh god that is awful
I can't think of a more awful idea. i can't even open the link as the idea horrifies me so much

[Zingalinging]

The NHS have strongly refuted it.

[VimFuego101]

I can't imagine how strong you'd have to be to opt to do this if your unborn child is given a diagnosis that means they won't live. I understand they're desperate for organs but I couldn't bear my child to be just a vessel for the organs. It sounds like a Margaret Atwood novel.

[BitchPeas]

God that's awful. I had to have a TFMR and if somebody had had this conversation with me at that time I think it would have tipped me over the edge.

[MaidOfStars]

The NHS have strongly refuted it
My understanding - happy to be corrected - was that this has arisen from some kind of conference for UK transplant units, and is a policy that has been suggested.

I didn't intend to make it sound like it was a formal policy about to be adopted.

[hiddenhome2]

It does feel rather unpleasant. A bit like growing people to be used as spare parts. Perhaps some women might be happy knowing that some of their child lives on in another person, I dunno it's all individual I guess. I wouldn't like to think of a woman being persuaded to continue with a pregnancy just so there could be another donor though.

[BitchPeas]

That is so distressing, my baby had anacephaly. I can't believe anyone would even consider this a good idea! I would never have been strong enough to do it but The guilt I would have felt at saying no, because of the children it could've saved, would have been excruciating.

[hiddenhome2]

You can see it being abused in poor countries as well. Women being paid to carry infants who are biologically related to the patient who needs a transplant, and then the baby's organs being used after birth. I think there's an underground market in organs as it is. This would be the next step I suppose.

[Duckdeamon]

Classic Daily Mail scaremongering story.

[Thurlow]

I read this article this morning and had the same reaction.

However, it did remind me of something I read a few months back about a woman who did continue to full-term so that her child's organs could be donated. She said she wanted his life to mean something. And I remember at the time thinking what an incredible, amazing thing that was to do, and what an amazing woman she was.

So I'm really torn on this. I have been fortunate not to have had a TFMR or anything similar so I can't comment at all on how it feels - I can't even imagine. It is not the right time to discuss this with the parents.

But I do see where the doctors who said this are coming from, and I can imagine that some women, even if they are in a distinct minority, would want to do something that could potentially save other children's lives.

The problem is, it is really not something that you can discuss at the time when someone could theoretically make that decision.

I have no idea what the answer is but I do understand the cold, scientific logic behind it.

[MaidOfStars]

Classic Daily Mail scaremongering story
Agree. But the premise is out there now.

[Duckdeamon]

What "premise"? One the DM has manufactured, for what? Not positive concern for people that's for sure.

[MaidOfStars]

I wonder if countries where TFMR is not allowed have higher infant donation rates?

[SwivelOnYourRedChair]

This was being discussed on Matthew Wright this morning (honestly Guv, twas not me watching it)

I think it is horrifying. How many woman would honestly carry a child for an extra 20-28 weeks knowing that there is no chance of survival and their child's organs were to be harvested at the soonest possible moment.

How detrimental would that be to their mental health, no matter how much support they had.

Any woman who has learnt that her child has a non compatible life disease, needs time, compassion and a hell of a lot of support to come to a decision on what she decides to do next. As far as I am concerned, in situations like this, organ donation talks should definitely not be discussed.

I can understand the need for organs (something like 7000 on the waiting list) but this is a step too far.

[OzzieFem]

The only place I could see this happening is in third world countries, where the parents of such a child, would carry it to term for financial compensation.

Before any mums start screaming at my post, I would ask, is it better to do this, then sell your daughters into prostitution at 7 or 8 yrs of age. I watched an internet video of one third world country, and couldn't believe the mother of one poor girl did this several times, and did not appear the least ashamed.

[VagueIdeas]

I call bullshit.

Something has got garbled somewhere.

No way will pregnant women expecting babies with lethal conditions be steered away from termination so their babies can be used as organ donors. That is beyond unethical.

Perhaps there was a hypothesis that those women who would carry to term rather than terminate could be spoken to about organ donation, but I can't see it being anything more than that.

[MaidOfStars]

Perhaps there was a hypothesis that those women who would carry to term rather than terminate could be spoken to about organ donation, but I can't see it being anything more than that
Apparently, this is the status quo - women electing to carry to term have organ donation wishes included in the context of palliative care.

The quoted surgeon appears to be advocating a more aggressive approach, one which could realistically only increase organ supply if it were to persuade women not to terminate? When, then, can this approach be suggested except before termination?

[MaidOfStars]

I guess what I'm saying is: if the status quo is acceptable (and I think it is), what can this surgeon be advocating other than including 'potential organ donation' as part of the termination decision process?

[hiddenhome2]

One would hope that any obgyn would tell the truth to a woman and ensure she knows that her baby would have no chance of survival. Not leading her down the garden path in order to see the child to full term, then broach the subject of organ donation. Things could get very murky.

[MaidOfStars]

Or is he saying that women who choose to continue with the pregnancy should be approached, rather than waiting for them to request info?

[MrsHathaway]

I also spotted the "continue to term to donate" story.

I think that it should not be suggested to families contemplating TFMR. However, once a woman has decided to continue to term the idea could be considered as part of discussions about likely survival/prognosis.

Because otherwise it's a bit like approaching the family of someone in a coma and saying "you know, if we turn him off that could save six lives through donation".

[duckyneedsaclean]

It is a very murky premise. It is nearly impossible to predict how long babies with terminal diagnoses will live after birth. The parents may want to spend that time with the newborn, but organ donation has to happen immediately in most cases - often the heart only stops beating when removed. (This is in an intubated patient with brain death).

What happens if the child lives longer than predicted? I personally knew a baby with anencephaly who lived 10 days, I've read about one who lived over a year.

[MaidOfStars]

Ah, I suspect the low level suspicion that health professionals won't provide the same care if they are thinking about future transplantation would be on major alert in the case of a baby not expected to survive birth (or long after). I know that some women feel their care wishes are ignored in such cases anyway, let alone if they felt it was being directed by transplant needs.

[5madthings]

This has actually already happened in the UK BUT I think the mother in question was pregnant with twins, one healthy one that would die shortly after birth and she asked and chose to do this.

It's an awful situation to be in but some women may take comfort from the fact their baby has helped others. How you would raise this as an option and how it could work in real is beyond difficult though.