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.

Such good advice from this thread OP. But this resonates with me so much and I feel is the way forward for you. She’s facing an agonising decision.

if she chooses to end the pregnancy, then she will grieve like any other Mum who has lost their baby, and I know she will have your unwavering love and support from you and her Dad.

I’m so sorry for her OP. It’s incredibly sad

Doctors are allowed to give advice.

where the threshold for termination is met it is perfectly possible and reasonable for dr to give advice that it’s the best option.

i don’t want to get into an argument about terminations - it’s not the place on this thread, but again those with no experience of the realities of a TFMR would do well to pipe down and not dismiss the lived experiences of women that do.

I think the poster who mentioned about the care of a child with high needs after their parent’s death makes a harrowing point. That would be something that would haunt me should I be in that position and something that your DD and son in law needs to consider when making their decision.

Sorry OP

A friend of mine had to terminate a pregnancy on medical grounds - she was told the baby would very likely live less than 48 hours if she even made it full time and the absolute best case scenario was a year of life in hospital. It broke her but it was the right decision.

For her she never refers to it as a termination, it helps her to think of it simply as her baby died, which is true. They had a funeral and did all the things you would do if it had been a still birth. She will never get over it but she know the best choice for their family as the baby’s mother.

I'm so sorry that your grandchild has foetal abnormalities. I think looking into the quality of life that a child with these abnormalities has would be a good idea. That said, some babies only live for a very short time whereas others benefit from neonatal surgery to correct things as best they can.
I've worked with children who had complex medical needs and not one parent regretted not terminating if they'd been given it as an option. Their lives had been turned upside down by the child's needs though e.g. one parent giving up work, needing to move house, medical appointments most weeks. Most still wondered if they'd done the right thing. What I didn't get to know about were the children with similar needs who didn't have as complex the needs. So doing her homework about it, finding a charity or support group that has info online that tells the stories and prognoses for children with similar birth defects or needs, is essential.
All that aside, if it's something like part of the brain or other essential organ is missing or in the wrong place and it's not able to be corrected, and the baby is likely to survive only a short time, I would be terminating.
Sending you a handhold.

It comes down to what the problems are. Some are not compatible with life, some will mean a life that is very difficult whereas others are more complicated as may require operations but could then be fine, whereas others require more care than average but can lead good lives. Without more information it’s very ambiguous.

ultimately you support your dd in whatever pathway she chooses, nobody here really know how they would feel until it’s them. I was in the “we’ve found problems” situation at 18 weeks and was offered termination but further testing couldn’t find anything concrete other than a specific marker, turned out to be fine but was told 50/50 dd had a syndrome. That horrible feeling i remember to this day.

thinking of you all

Oh and a gentle bit of advice, if she does have to terminate, it may be best limiting who knows, my good friend had to at 22 weeks and even her mum thinks it was a miscarriage, it’s just such an emotive subject, 20 years on we message on that day

See the difference in language. You were presented with much the only option. Not directly advised. Least I hope not.

(How is The Rancliffe Arms these days, still good for Sunday lunch?)

So sorry you are all going through this.

It happened to my DS and DIL. They went for a gender scan and abnormalities were picked up.

After a lot of different appointments and soul searching, they decided to terminate, this was at 19 weeks. All we could say to them was we supported any decision they were going to make. They have since gone on to have a healthy baby who is now 2.6 years and no one has forgotten their first born.

Just to clear up the misunderstanding. My point was, we sometimes hear what our subconscious is telling us to do. The choice must always remain the patient's own.

For what it's worth, my own sad decision would be to terminate.

I wish both your daughter and your family well OP.

I am really sorry you’re all going through this OP. We have known of a similar situation twice, once on each side of the family. Each couple chose a different option which I’ll share in case these experiences give you useful context.

My SIL chose to terminate at 22weeks for medical reasons, following advice of consultants. That baby had a condition where to top of the head and brain had not formed.

DH’s cousin’s baby had a diagnosis of a chromosomal condition and it was found to have affected the parts of the system needed to breathe independently. The consultants offered termination as an option. That couple decided to carry on the pregnancy and let nature take its course because they thought (based just on hope) the baby might do better than expected. That baby died a few days after being born a little early by C section.

For me, it would make a big difference to me if the experts said my child would live but have a life of great disability and dependency and low quality of life. Personally I would prefer to spare my child and my family that. But I know many people would disagree including those who live with that situation.

good luck to you all and sending moral support.

@PiggyPigalle

Just to clear up the misunderstanding. My point was, we sometimes hear what our subconscious is telling us to do

oh fuck off! Really just stop taking. I didn’t hear what my subconscious was telling me to do.

What I desperately wanted to hear is we can save him, that there is something we can do, that there is a surgery, a treatment a hope.

i begged. said I didn’t care how unwell he was I just wanted him to live, that I would do anything, that we would do anything.

and the consultant held my hand and old me there was no other choice, that he wouldn’t survive delivery and this is what I needed to do.

the arrogance of coming on a thread like this and declaring that women who have lived the experience of being told their child will not survive are incorrect, and patronising us with your assumption that we heard what we wanted is disgusting.

OP I’m so sorry I’ve derailed your thread. I wish your daughter the very best in making her decisions. Do encourage her to reach out to arc and sands and I also echo another posters wise advice: she doesn’t need to tell anyone anything more than she’s comfortable with.

Has the consultant mentioned it as an option or has he actually advised it?

If he’s advised it then I don’t really think there is a choice to make.

And if it’s offered as an option only, encourage dd to look at it from a quality of life angle for the child. Forget her own feelings for a moment and think of how difficult life would be for the child. If life would be hard, is it fair to put a child through that?

And after that say there is no right or wrong answer.
It’s easy to go with your gut answer to say you can cope with anything, but she needs to think of the practicalities, the logistics and the relentlessness of everything 24/7 possibly for ever. Can she really cope with it, with the unknowns. She needs to be realistic. Life may be really hard. Don’t do it through guilt. There is no right or wrong answer.

Life with a life limiting/ extremely disabled child is hard hard work. If she is doubting the termination and the child would survive after birth with permanent disabilities, I would suggest she visits a family who are in the same situation and sees how she feels then.

Holding your hand and telling you that you needed to do it was incredibly inappropriate

Sorry for asking as I have no experience of this.. but if a foetus is incompatible with life, and death after birth is guaranteed (as opposed to disability) does the mother get the choice as to whether deliver at full term or to terminate? I always presumed it was the mothers choice rather than doctors, but then I don't live in the UK. I always thought if I was in this horrendous situation I'd rather deliver and have the baby die and have a funeral and mourn, rather than terminate. Yes it's a horrible thing to contemplate but it was always my gut feeling on this.

Yes the mother still gets the choice x

Of course we don’t know the odds here, the baby may be born alive and suffering and die in pain afterwards. Sometimes termination earlier is the best thing to do in that case rather than leaving it to full term, even if that means not having a full term baby to bury.

Yes. I agree. If this were my daughter I'd offer her the opportunity to sit down and research the pregnancy difficulties and get a feel for what the research says.

Consultant might be right for your daughter or they might not be right for your daughter. The Consultant is speaking with knowledge about what THEY would do. Your daughter needs a bit more knowledge to decide what SHE feels is right for her.

@Dontlletmedownbruce yes mothers still get the choice, but at 25 weeks there’s really very little difference when it comes to the opportunity to deliver and grieve and have a funeral. It just happens a few weeks earlier than otherwise and the timing is on your terms - this was important to me as I had other young DC and didn’t want to have a medical crisis whilst caring for them.

you still deliver your baby, spend time with them (in my case the hospital were able to arrange a cold cot in advance so we had more time with him); the midwives that are present for the delivery are specialists who washed him and dressed him and arranged for photos and hand prints.

we still had a funeral and grieved as we would have done if he’d been born at term.

I was I’m a similar position to you daughter. My daughter was diagnosed a life limiting condition at around 22 weeks, which results in still birth or a life lasting just a few days.

I spoke to all the advisors and made a decision after weighing up whether my daughters life would result in pain and suffering - ultimately the decision I made doesn’t matter, because the impact on the baby if different in each case.

Looking back now, I think of having to make the decision as me being the best mum I could for her. All parents have times they need to weigh up options and make the best possible decision for their children, even if it’s hard for the parents. Its just that for most parents they’re not this hard.

I would advise her to prepare for the birth so she can make the best of it - think about whether she wants foot prints, photos, etc. Does she want to choose a particular outfit? I have a best friends type necklace where I have half and my daughter was buried with half, and I bought a teddy to bury her with. Lily Mae Foundation supports with this kind of thing in the midlands - I’m sure there are similar charities elsewhere

Without sounding awful, medical abortions (not requiring a birth) can be done up to almost 24 weeks. Does this mean if OP were to get an abortion now they would not just “dispose” of the fetus?

@sprinklesandshines I think perhaps you’re confusing terminology: a medical abortion (as opposed to a surgical) involves (in the gentlest of words) the delivery of a the foetus no matter its size. In the early stages of pregnancy this is usually via the “abortion pill” and is more akin to a heavy period, in later stages of pregnancy it involves the same drugs used to induce a full term labour and will be managed in hospital with specialist midwives.

There is a window usually 10-16weeks where only a surgical option is appropriate (commonly known as a D&C) but either side of this it’s a medical termination.

having spoken to many women who have had TFMR, hospitals (no matter the stage of pregnancy) treat women and their babies with great compassion. At any gestation the hospital can release the baby to an undertaker for a funeral or they can arrange for the baby’s remains to be buried with other lost babies. I believe there is a designated spot in one of the big London cemeteries where this happens.

Although before 24 weeks you do not get a registration of stillbirth you can still get a certificate of baby loss.

it’s a very personal option as is seeing your baby and spending time with them.

I think it very much depends what it is.

Down syndrome or similar? Up to the parents whether they can provide and care for a potentially very disabled child. No way of knowing how badly affected until birth. There is no right or wrong decision there.

Severe Neural tube defects or defects that are incompatible with life, I think the right thing is to terminate if all that child has to look forward to is a brief life filled with suffering.