Termination yes or no. Sad sad situation

[Vodkaandlemonade]

Our DD is 25 weeks pregnant. Last scan shows the fetous/baby has a few problems.
She spoke to her consultant last week and he has advised she terminates.
She is seeing him again next week. Both her and DH havej had a couple of counselling appointments. Midwife is seeing them everyday.
Only me and her dad know that there is a problem.
We are scared of saying the wrong thing.
I feel awful but she is MY baby and I don't want her to be hurt.
Tonight she asked me what she should do. I couldn't answer.
Her dad couldn't answer.

@Vodkaandlemonade it's worth finding out exactly what the baby has, and the prognosis, before deciding whether to terminate, and I say that as someone with some medical training.

When I was pregnant with my first, the baby had ventriculomegaly (some fluid on the brain) and I was given no information about the condition (not even a leaflet!) and offered a termination. I did my research, realised the amount of fluid the baby had was likely to only cause mild/minor brain damage at most, and decided not to terminate. I now have a healthy, intellectually gifted 4 year old.

So it's definitely worth DD finding out what condition baby has, joining the relevant Facebook group (there's one for almost every condition) and reading the relevant literature so she understands exactly what the condition/conditions are and how they are likely to affect the baby.

If the condition is severe, then knowing how and why it's like that may well help her come to terms with terminating if that's the right outcome for her.

The abortion act is very clear that termination on the grounds of foetal anomaly is only legal if two practitioners believe that the child will suffer significant physical or mental disability as a result of the pregnancy going ahead. If termination is being offered as an option, it’s because the consultant believes the grounds have been met.

I’d say follow the consultant’s advice.

I’ve been in your daughter’s position OP and had to have a termination for medical reasons. It was the kindest thing for my baby and saved her from a very short, painful life. It was my only pregnancy.

I hate that it happened and it is a wound that never really heals. However, I know it was the right thing to do for my daughter. I regret it happened but not the choice I made because it was the right one for her. A parent will always bear pain so their child doesn’t have to endure it and that is true even before they are born. It’s very hard though.

Previous posters have mentioned ARC who are very helpful. I was also allocated a Bereavement Midwife who was fantastic.

I am very sorry your daughter is going through this.

I’ve also been in your DDs position and the consultant absolutely did advise a termination, in all honestly it wasn’t really even presented as much of a choice just as something that very sadly ought to be done. I was treated with enormous care and respect - as was my baby - and many years later remain enormously grateful to the Drs and midwives that took care of us.

You need to tell her that there's no decision that won’t lead to heartache and regret

I think this is really bad advice, although I have felt crushing grief and heartache I have never regretted my decision. Please don’t encourage your DD to feel that she is capable of making a wrong decision here.

i second/third/fourth ARC and also Sands are incredibly supportive.

you sound like a wonderful mother. I did not have the same during my experience, I think telling her that you love her and want whatever she wants and that you are scared of saying the wrong thing is the best advice

Terminate.

I totally agree with you. I have never once regretted ending the pregnancy. And yes termination was presented to us as pretty much the only option at the time too.

At the time we were both obviously very upset that the PG had ended that way but went in to have two, very much adored, DC.

Thank you for your messages.
I will contact the grandparents side of the ARC.
Lots of questions but don't want to ask DD and her DH.
She is seeing 2 different consultants next week and is
having counselling. Midwife is supporting her as well.
I will mention if she wants me there as well as her DH
but not to feel as though I have to.

I think you all need to do more research into the condition the baby has and it's prognosis before making any decisions.

For those saying that a Dr wouldn't suggest reminding unless the sustain was dire - you'd think so, but that's not always the case. There was a woman on the BBC a wife who who says she was offered a termination 15 times for her (otherwise healthy) baby with downs syndrome. I don't know if anyone else remembers the controversy with drs signing off late abortions on medical grounds for things like club foot, hare lip, so again, I wouldn't just assume that if a Dr says they are skint to sign off, that the situation is hopeless.

Others are told they need to terminate for Edwards/patau as they are incompatible with life but many do survive, albeit with profound disabilities. I still follow a woman on FB who was on MN with her Edwards pregnancy. Sure continued, hoping to spend a few days with her girl, then maybe make it to Christmas, then her birthday etc. She's now 5.

I'm not saying people should necessarily continue in those cases, it's totally up to the parents etc, but that is important for the parents to do their own research and make up their minds. All you can do is be there for them whatever happens.

You need to tell her that there's no decision that won’t lead to heartache and regret.

i really wouldn’t say this to be honest. Yes, she will have heartache whatever she does, because there are consequences either way, but there is no room for regret here. Whatever the decision, it should be taken in the best interests of the child, and that’s not something she should ever regret..

I would just advise her to get all the information and make whatever she feels is the right decision. I'd let her know she has whatever support she needs from me whatever she decides.

What a desperately sad situation. There is no right answer.

I agree on focussing on her and her DH really understanding the facts. The nature of the condition, the impact on the baby, is the baby likely to survive to term, is the condition fatal and if so life expectancy. What limitations would the baby have or pain if born. What would be the proposed plan for delivery if she doesn’t terminate.

If the baby would have a very short life expectancy, what are hospice type arrangements.

She should keep asking the doctors to clarify and expand on things. For instance if they said most babies with this condition die within a month, what about those who don’t - how many and for how long will those survive and what quality of life will they have.

If she is finding it hard to be analytical and ask the right questions in the moment and take in and retain the information - and who wouldn’t - if you or her father is able to help with this you could offer to attend with her to help get the right questions asked. The ARC may be very helpful with questions to ask. I would suggest have written lists to help prompt.

Absolutely the consultant would never advise that. Even asking them directly. They'd soon be drowning in law suits.

For the patient to have thought that however, shows their own bias to termination, which must be respected.

So sorry to hear that your Dd is in this position.

I spent a week waiting for results that may have meant termination was a strong option for some.

One of my concerns (among many conflicting feelings) was that I would be ashamed to admit that I had terminated a pregnancy while friends were advocating for severely disabled children, living with disability themselves, or just against termination on any grounds

So i would reassure your Dd that it is just as valid and potentially compassionate decision to make as parenting a child with lifelong disability and / or health issues.

The decision must be hers. In your place, I’d see my responsibility as supporting her to make the right decision for her. In order to do that, she needs facts and information. It might well be that she can’t face googling or looking for those facts, so that’s potentially something you could do. You could then present her with appropriate facts and links, eg with this condition 5% die at birth, 15% within 2 years, etc, most of these surviving children will have x and y, here’s an example of a child with this condition, etc.

The more informed her choice is, the less likely she is to question herself later.

Stop overriding women’s real experiences with your inaccurate assumptions

So what you’re saying we’re lying then? We were absolutely advised to terminate and it was the best decision idiom for us to make at the time.

Other people may choose not to terminate, they are equally free to make that decision

IIRC one of the explanations for signing off on club foot made the distinction between club foot in isolation, which is treatable with good outcomes, and club foot as an indication of more serious birth defects such as Spina Bifida, which would only have been confirmed at a later stage of the pregnancy than the scan on which the anomaly was first detected. Same with hair lip. A cleft lip will show up easily on a scan, but the more serious cleft palate - often severe and disfiguring - is not easily detectable and will likely not show up until later scans. And again, with Downs, there are high functioning and more severe cases, but that doesn’t mean that parents shouldn’t be made aware and allowed a choice.

I think there’s a difference between ‘signing off’ on terminations and presenting all the facts to the parents, including any potential and more serious implications as yet undetectable, so that they can make an informed decision.

The Abortion Act amendment of 1990 makes it clear that any recommendation for or offer of termination on the grounds of foetal anomaly must meet the strict thresholds in law. Two doctors are required to be in agreement, so l think in the main, where this happens, the doctor will be sure they have their facts straight before presenting them to the parents. Not that a second opinion would be unreasonable, but where there is little doubt, it may just be clinging to false hope.

A relative told me she was advised to terminate (by a sonographer) and she was shocked because at that stage she hadn’t reached any decision,

I had a termination for issues with the baby.

I already had children and overall I didn’t want to sacrifice my career or worry about what would happen after my death to the child. I think it is hugely unfair to expect siblings to take on the responsibility of sibling care. They never really get a choice like a parent does.

I will always have some sadness about it but I have no regrets. DH cousin is disabled and his Aunt and Uncle broke up. It’s very common for this to happen when people have the strain of this sort of care.

ARC were really amazing and very helpful as were all medical staff. My SIL made it very much known that she thought DH and I shouldn’t have had a termination, we went from being friends to me always holding her and her judgement at a distance.

@PiggyPigalle i think we have to acknowledge that not every member of staff in any organisation follows policy or best practice, which is why there are so many settlements in NHS obstetrics claims.

This is utter nonsense. The consultant can make a recommendation based on what they know of the severity of the condition, without breaching the law. This is certainly what happened to us. The consultant said that given the severity of the birth defect, termination would be their recommendation but that obviously the decision was ours, and that they were putting it forward as an option for consideration. And l’m not understanding your last sentence. There was no bias, and no misunderstanding and to suggest that the patient would put their own spin on things to justify termination is abhorrent.

But in the matter of termination due to foetal anomaly, it’s neither policy nor best practice, it’s the law. And it requires two doctors to be in agreement that a case meets the threshold.

Agree. Same for us. The suggestion that the parents attach their own bias to the doctors’ words in order to justify termination is beyond belief.

@Rosscameasdoody there are important safeguards in the system as you say.