I'm confused and scared and need a little advice re ultrasound anomaly...

[NC505]

Had the 20 week scan today and baby was found to have a problem with the bowel. It's possible that this is nothing to worry about, but could be a marker of downs, cystic fibrosis, and a number of other disabilities. We are not in a position to be looking after a disabled child, and have already decided we would terminate if this were the case. I ask for no judgement regarding this, as we have our reasons, as does everyone else who chooses this option.

By the time we have blood tests and another scan, I will be 22 weeks. If these snow abnormalities, it'll be further testing, by which point we will be extremely close to the 24 week point for termination.

Now I am not discussing this lightheartedly. Baby is likely ok, but in reality you have to think about these possibilities. If we end up having to go past the 24 week mark due to late testing, I may end up having to give birth to a baby we can't look after.

What are my options here? I'm in a bit of a state so need some sensible, non judgemental answers. If anyone has anything nasty or negative to say I kindly ask that you refrain.

Anyone?

I’m sorry that you’re having to deal with this, OP. It must be very hard.

A termination for medical reasons is legally possible after 24 weeks. If your baby has a serious disability then you will have options, including the option to end the pregnancy.

Please be kind to yourself and don’t fixate on the 24 week deadline

There are other options like having the baby adopted if you felt your weren’t in a position to have a poorly child. My son has special needs and is the light of my life but sometimes it is hard especially all the appointments so no judgement from me.

love I don't think I could cope with pregnancy knowing I had to give my baby up. Lovely you have a good relationship with DC. I feel so guilty even writing this post...

struggs thank you. I'm hoping and praying it's just one of those things...

It is difficult enough for children to be adopted without having disabilities or severe illnesses. May sound harsh but it’s just realistic and it’s not easy to simply give a baby away. Always find it irritating when people throw that out there as if you’re giving away an old handbag.

I feel for you OP, I really do. PP’s are correct not to fixate on the 24 week mark as it can be pushed in extreme circumstances which yours may well be. I hope everything is ok for you and your baby in the end .

mouse I just don't know how I would cope with that. This is so awful,

So sorry to hear this. Is there any reason why you are waiting so long for follow up tests and could this be sped up? Would you be in a position to look into going private if that might help?

troubled we just can't afford it. I have no idea why they are waiting a week. It's all very confusing and I feel a bit in the dark about it all.

so sorry that just seems so cruel to keep you waiting. I have no idea if you could push for a quicker appointment on the NHS but it might be worth asking your midwife. I also really hope it’s good news for you when you are seen.

I can’t offer any advice, but I also know the choice I would make and I already dread going past the deadline before knowing all my options..
I’m only very early in my pregnancy, but I’m older.. I’m seriously considering the harmony test to try and highlight any issues.

I’m so sorry you’re going through this ☹️

troubled we were slightly confused as to why they didn't do the blood tests today. The consultant was in who is going to do our scan but there may be a reason they're waiting so long? Not much was explained to us.

Does anyone offer NIPT privately nearby? You might be able to get answers more swiftly?

Well if you couldn't cope with adoption and if a termination isn't possible then I'm not sure what you expect people to advise. The only other option is to terminate the pregnancy now, before you know if there is anything wrong.
Terminations are sometimes allowed past 24 weeks. You will likely have to give birth to the baby either way.
What makes you think you wouldn't be able to look after a disabled child? A lot of people think they couldn't manage but they do.

bibi we really just can't afford it. I've asked my midwife to call me so hopefully she can help.

Did you ask why they were waiting a week? They are probably waiting as scanning any sooner probably woukdnt be beneficial.

You can terminate after 24 weeks if it's for an abnormality

why that's not not a kindly put or helpful comment. Sometimes just a little bit of support from others even if they can't offer advice is helpful in this type of situation. We have our reasons, and we wouldn't be able to look after a disabled child. I don't feel like people need to know the ins and outs, just that it's not an option for us. I've just found out my baby could have a life changing disability and need a little help even if it is in the form of kindness and a support network.

dreaming not for most anomalies. It's actually very rare.

We were told it's because they're extremely busy. It was all a bit of a blur.

For what it’s worth @NC505 I couldn’t cope with a severely disabled child either, I know it sounds harsh but I just couldn’t.

No one can judge you, pay them no mind.

A good friend of mine has cystic fibrosis. She has a very happy life: studied at a prestigious university, is married and has a job. She has made the decision not to have children herself due to the risks it would pose to her health.
Yes I am sure it has been incredibly hard for her parents at times, but she has not needed any extra care from them exactly - she is perfectly able bodied and highly intelligent. She just has needed to have lots of extra medical support, provided by the NHS.
A diagnosis of DS would, I think, have a far greater impact upon your life as a parent than CF. I am not saying that having a child with CF is easy...far from it. But a child with CF can live an independent life.

The reality is that you cannot possibly make a decision until you know the outcome.

I am not judging your decision to want to terminate a pregnancy in the event of serious disability, however what did strike me is that you said “We are not in a position to look after a disabled child.” The reality is that far more disabilities cannot be tested for and would only present after birth or even some time after birth. If your stance genuinely is that you wouldn’t want any disabled child, have you discussed what you would do if the child were born with or developed disabilities you were not aware of?

There are several MN’ers with children with severe disabilities requiring 24 hour care for the rest of their lives, and I won’t deny that it is very hard. But in most of those instances those posters were completely unaware their child had a severe disability until birth or even months/years afterwards.

If you genuinely feel you couldn’t look after any disabled child then this is something you do need to talk about for the future in the event you decide to have any more children.

This happened to us , told we had markers for CF , I had blood tests taken to check if I was a carrier and my husband was to get the same test if mine came back positive .
A week of waiting , years etc only to find out I wasn’t a carrier and why they’d seen on the scan was just one of those things.
Hope all goes well for you x

For severe abnormalities terminations are legal post 24 weeks, yes, it is rare because usually people do find out before this but it can happen. I work on an obstetric unit and have known of these happening.

Sorry to hear that you have had distressing news.

An abortion can be carried out past the 24 week limit in cases of serious disability, so if the news is bad, you still have options.

@SummerGems we have discussed this and it is not an issue I require advice on. The issue at hand is that which is in the OP. Just needed a bit of support I guess regarding my current situation. The likelihood is that the baby will be fine but there's a chance it will not be.