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.

I have been there and the consultant will absolutely not have advised termination. Their job is to give as much info as possible to help the parents make an informed decision.

If your daughter is hearing a recommendation to terminate, then I suspect this is where her head is at.

I terminated earlier, as the problems were obvious at the 12 week scan. I was told there was a chance that some of the issues would resolve as the pregnancy progressed, but a far higher chance that I would have a late miscarriage. I knew if I miscarried late I would never get pregnant again, so I chose to terminate. Now have 2 happy healthy kids. A v tough decision, but I can honestly say I don't regret it at all. Bringing up a disabled child with the state of the NHS and social care as it is, just doesn't seem possible without a lot of money and family support, of which we have neither.

I’m so sorry you and your dd are going through this. Tell her to find out more about the suspected condition of the child.

I think the law in the uk has changed about Down syndrome and abortion but I would like to say I have a child with Down syndrome and she brings so much joy to our lives. She is truly beautiful inside and outside and captures the heart of everyone who meets her. She has a happy and full life with lots of friends and hobbies.

I won’t sugar coat the first year/18 months being particularly difficult as she had a lot of health issues. They are now mostly repaired/controlled and she is doing really well.

We didn’t know about her condition although I think I would have had her anyway had we known. It was just a shock at the time and there was many, many tears. Now I wonder why, she has been such a blessing and I am glad she is with us.

I wish you all the very best with the testing and her decision. It is such a difficult one to make. If she continues with the pregnancy there are a lot of support groups to help her through the hard times. All you can do is be there for her while she makes this difficult decision. Sending love and support ❤️

It’s easy to feel like that in the abstract but different if it’s an actual baby that will be born to suffer for a few hours.
But of course you have the choice, you can refuse any medical treatment.
You can also mourn and bury the child however the pregnancy ends.

You can’t make this choice but you can support her. These guys are amazing and I cried down the phone many times to them. You can call, you could call together. They are an amazing charity.

www.arc-uk.org

I don't agree with posters saying 'go with her gut'. It needs clear, logical thought. That's very hard of course. And you're wise to keep out of it unless she's asked you what she should do and then you can offer pros and cons as you see it.

This is a terribly sad situation. But at 25 weeks if they have diagnosed enormous issues around disability, quality of life and length of life, your DD should try to consider her baby's future, which sounds pretty dire. No doctor would suggest termination other than in very extreme circumstances.

I hope they find a way forward.

I would see her in person if you can. Ask if she wants to talk. Ask what you can do to help.

A personal bit of advice - If she is asking what you would do and you think that she wants to terminate but is feeling shame and guilt (and you would terminate in her situation) then tell her that and her dad should too.

The truth is you won’t sway the decision to terminate but you may ease her guilt if she does it anyway.

If she continues then she will see it as a clear choice for her not one she has felt is the ‘right thing’ to do.

I have been there and the clear unequivocal honest statement of what 80% of people do do in this situation from a close family member stays with me to this day. I clung onto it throughout all of the tough times.

I was so hurt by someone (quite unfairly from me) for the woolly slightly judgy ‘my husband would defo have done that’ implying that they wouldn’t when they hadn’t been put in that situation.

If you wouldn’t terminate and feel strongly about it then I would say ‘I can never know what my decision would be unless I was in the situation directly and neither can anyone else so the decision has to be yours but I will support whatever you decide’

Much love and support - I would go onto the TFMR boards as you will get good advice

ps - people are derailing on an important subject. Whether the consultant blatantly ‘advises’ or heavily implies let’s be honest it’s the same thing so can we leave this.

Totally agree. My consultant was very clear that my baby had no chance of living more than a couple of hours and the risk was high that I might go into labour very suddenly.

I would add that I was given no information about the process, which was actually induction, and that I had all the physical and emotional symptoms of postpartum, such as the milk arriving. This was a shock, naive as it sounds, and my employer was awful.

As someone who has been in your DD situation, if the consultant is advising termination, it usually means there is a life limiting or significantly life altering condition. They wouldn't recommend termination at that stage unless it was serious (my consultants wouldn't give me the 'we think you should terminate' conversation until it was completely clear we were looking at a life limiting condition).

I wouldn't give her your opinion on either way - she needs to come to that decision herself or she may forever think she only did something because you said so.

I'd start with something like:
"My lovely girl, I'm so sorry you're in this difficult position. No one can make this decision but you & your partner. Whatever you decide I'll (we'll) be there for you.

We can always talk about it though. Do you want to talk me through your thoughts at the minute?"

Then mainly, just active listening. Reflect what she's saying back to her, ask open ended questions rather than yes/no if you can, so there's room to elaborate and just let her put all her thoughts and worries out on the table.

Through that process some of her own questions may emerge - there may be information she doesn't have yet, and you could possibly support her in writing a list of further questions or points to research before the decision needs making.

Additionally, it might be helpful to understand/gently let her know that whichever option she goes for, there will be some grief attached to the decision. It's inevitable with these kind of 'fork in the road' moments.

Wishing her all the best

As per several posters experience, including my own, the consultant gave all the relevant facts and was clear that although the final decision was ours alone, their recommendation was that termination was the best option in light of the profound nature of the disability and risk to the mother. It’s nothing to do with mis-hearing or misinterpreting, or ‘where your head is at’. I’m so sorry for your experience but the language used to convey the facts is not universal and every case is different.

No I am not, you lack comprehension skills.

I have stated my experience - that a dr did advise a termination - to rebut an uninformed poster claiming that it would never happen.

if you were not advised to have a termination then my comment doesn’t undermine your experience, not once have I suggested that drs are absolute in their approach. I’m sure that there is a breadth of experiences to reflect the breadth of circumstances that women find themselves on.

so don’t your DARE come on a thread talking about baby loss, where I and other posters have shared what I hope is helpful and compassionate advice to the OP and call me a liar.

I'd go with the consultant's advice

Just help her think things through but don’t try and sway her one way or the other. This needs to be 100% her decision and she can’t feel judged either way.

To echo another poster, don't you dare tell women who have sat in a drs office and been told in actual clear concise words that they ADVISE a termination that they didn't experience that at all.

im so sorry - such a difficult and sad situation.
but I too would follow the consultant’s advice.

hx

This is brilliant advice … again am so sorry Op you’re DD is going through this x

Has she had an amnio? Does she know what issues the baby has? It’s impossible without knowing for her to make an informed decision. I was put under pressure to terminate after a 1 in 3 downs result, but baby did not have downs and had no medical issues whatsoever (ironically my other baby does have medical issues!). I insisted on getting all the information before making any decisions.

If she has had an amnio and knows for sure what the issue is. Speak to parents whose children have whatever condition it is (there is a support group for most things).

Its more than okay to say you don’t know but you’ll support her regardless, OP. It’s really important that whichever way she decides, she is totally sure it’s the right one for them and the baby. Then hopefully there will be a measure of peace even in the awfulness of termination or caring for an unwell baby.

To condense my own experience in this situation, I was given the whole ‘option to terminate’ based on very vague results. They were validated when Ds was born but there was never any clear results from tests and scans during pregnancy, eg- 1in 2,016 chance, shorter bones and small measurements. Nothing that majorly alarmed me but everyone is different. Maybe the results would be clear enough for someone else? He had a rare genetic disorder that wasn’t diagnosed until 3 weeks after he was born. he lived for 3 months. He was the sweetest most cherished baby but he was very ill and unfortunately spent his whole short life in hospital. It’s made me the person I am today and I think of him and will think of him for the rest of my life. Do I regret continuing? No, I did what I thought was best in the moment. Was it the most painful experience of my life? Yes.
this is already a very real and painful situation for your daughter and you all, that only she can decide but if I can take anything from what you’ve wrote and what I’ve experienced, there is definitely valid cause for the termination to be an option at this stage and whichever she decides, she will need a lot of support. A termination past 25weeks is very traumatic and will affect her greatly. I’m so sorry that this is happening.

Why do you say this? Are you calling OP a liar, or her DD?

Agreed. I know people who had a TFMR the babies condition just wasn't compatible with life, internal organs weren't developing as they should.
I know that baby had a funeral and is mourned every bit as much as if they were born full term.

We all forget because we are lucky to be in a first world country with decent medical care that every pregnancy and delivery has risk to the mothers health.

That is the whole reason why we have scans at 12 and 20 weeks, to check the baby is developing properly and enable women to make informed choices if necessary.

@Vodkaandlemonade I hope your DD is OK
You can only offer your love and support because no matter what decision she makes she's going to need it.

I'm really sorry you're in this situation. It's hard to advise without knowing specifics.

If your daughter has a diagnosis for her child, I would recommend seeking out a parent support group for that specific condition to get an idea of what life would realistically be like for baby and the wider family if your daughter goes through with the pregnancy.

Consultants have to give worst case scenarios, and they offer medical termination for many conditions.

My daughter has what is considered a complex congenital heart defect. I didn't know until she was two weeks old. However every parent I know who has found out during their 20 week scan was offered a termination. 97% of babies have a normal life expectancy and can live a typical life once they've had the condition repaired.

My daughter is 12 now. She had a rocky infancy, where she was socket than most babies with this condition and she has 2 major open heart surgeries before she was 4 months old. BUT her heart has been stable for years, she's just been told they probably won't ever need to do a valve replacement and she currently does dance, artistic roller skating, gymnastics and wants to also pick up horse riding. She's rarely ill and the ONLY things that give away she has a heart defect are that she's short and that she has lower stamina than her peers when it comes to exercise.

Please don't think I'm saying your DD shouldn't terminate. I'm just saying that it's always worth finding out what life beyond the textbook is like before making a final decision. Group admins will usually let you into groups for relevant conditions if you specify the situation and say you want to see what life is actually like

All you can do is tell her what you would do (that's a personal choice) and follow it up with the fact that whichever choice she makes is going to be done for the right reasons and that what matters is how she feels about it.
Talk through weighing up survival chance, likely pain level, quality and length of life and how likely the results are to be accurate. Then talk through support you are able to give if she has the baby, and that you'll be there as much as she needs if she has the termination.

My personal view at that stage would be to have the baby and then at least there's the 100% knowledge that the scans were right and there was no chance of survival. However it depends whether she would find it more traumatic going through these last few months of pregnancy knowing that the baby likely won't survive.
I would also personally view it as (depending on the condition) the fetus is having a few months of life (albeit in the womb) if their condition isn't compatible with life once born. It really depends on what decision gives her the most comfort though.

I see we have a couple of posters who say that consultants never advise termination. They are wrong. Consultants will advise termination for medical reasons in some situations where it is necessary to protect the mother's health or because of a medical condition relating to the baby.

I agree with those saying OP cannot advise her daughter whether to take the consultant's advice. She should listen and be supportive, but this must be her daughter's decision.

Personally I'd terminate as doctors dont even discuss termination at that stage unless they consider it in the best interests of baby as well as mother. However all you can do is tell her that she needs to do whatever feels right for her and her husband and you will support whatever choice she makes.

It's absolutely astonishing, isn't it, that posters do that. People who weren't there but who are nonetheless confident that it couldn't have happened. They confuse the way doctors are supposed to behave (or the way they think doctors are supposed to behave) with the way they actually behave.

I feel extremely sad for the OP and her daughter. I do have a friend who went through a very similar experience (terminating a pregnancy after being told the baby was not expected to live for more than a few hours after birth) and found it highly distressing. There's no easy answer to this one. It probably is worth the DD talking to others who have been through this before making a final decision.