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 had a similar experience at our 20 week scan when we were told that there was a possible issue with our baby's bladder. We had further tests etc (again with a 2 week wait which was excruciating) and we then learnt that our DS had an abnormality and a diagnosis was given which meant that we could understand the issue and the ramifications for DS.

I was 23 weeks pregnant then and we were given the option to terminate.

We did not want to do this but that option was there and I am sure that we would have been supported had we chosen that route.

FWIW, our son had a few operations in the first year or so and is now a healthy, happy 7 year old.

BUT the option was there, and will be for you too. I wish you every luck and hope that you have good news at your next scan.

My midwife is now off for the rest of the week. Does anyone have any advice on who the next best point of call would be?

Can you ask to speak to a colleague of your midwife, surely they all have access to your notes? There may be a specialist midwife to deal with mothers whose child has an abnormality and is considering termination.

If you do decide to go for a termination, do your research as you may not be offered all the information you need. You will need to give birth and you will be in a maternity ward, though in a private room. At this late stage your baby is very likely to be born alive. You can request to have the baby's heart stopped prior to the termination so that it is not. But that is not an easy thing to go through either. None of this is easy, and whatever decision you make, it's unlikely to ever leave you. i really hope things turn out for you ok, and your baby is ok.

NC505
Its not exactly unkind, you asked what are your options, but you have few of them and the ones you do have you have said you couldn't do. For example adoption or a termination after 24 weeks.
You asked for options and answers.

Was it an echogenic focus OP? (A bright spot) We have this. Referred for extra scans, at consultant scan they took bloods checking for cystic fibrosis and CMV. Unless there are other soft markers, or you're high risk, Downs is unlikely. Nurse advised us not to google, but obviously I did, and most cases seem to work out fine - ultrasounds pick up a lot more these days. If you do need support go to ARC, and I appreciate that it's very hard not to think the worst in these situations, but try not to catastrophise until you have had the tests and have as much info as you can get.

I would definitely advise talking to someone at ARC, they are an amazing charity. It is possible to terminate a pregnancy for fetal abnormality after 24 weeks gestation so don't worry that this option would be taken away from you if it was required.

I agree with @Whywhenwhere you asked for options and possibilities. But it is a fact that the baby is far more likely to have disabilities which would not be detected on the scan, and if your stance is that you absolutely do not want a disabled child under any circumstances then perhaps your best bet would be to terminate this pregnancy now given the possibility does now exist.

I do in fact know someone who terminated a pregnancy on the basis the baby could have had a disability and the pregnancy was unplanned, but it was before twelve weeks.

But please do gain support if you are likely to terminate because a termination after 24 weeks is not going to be an easy process. You will be required to give birth naturally and after 24 weeks the baby will I believe be given a birth certificate and registered as a live birth if it is not stillborn.

It is possible that the reason wy you are having to wait for the blood tests is so that you can discuss the potential possibilities in the event a disability is detected. Less than 2% of terminations happen at this stage and so this is something which people need time to come to terms with if that is the option they choose to take.

Although the vast majority of pregnancies are terminated where Downs is detected these are usually after the twelve week scan and/or after blood tests. Apart from terminations for conditions incompatible with life terminations even for Downs are very, very rare after 24 weeks or even after twelve weeks.

It is not unkind to suggest a termination now if you are that certain that you don’t want a disabled child. Three/four weeks is a long time in terms of a pregnancy.

Summergems - the baby would not be born alive. If a termination is carried out then potassium would be injected into the heart. However it would be a registerable baby.

Ah yes of course :) it occurred to me as I read it because then it obviously wouldn’t be a termination.

But I do think that people who talk about the option to terminate after 24 weeks being there and how someone could go through that need to also be aware that a termination at this stage is in fact a stillbirth, and that if it is a disability which doesn’t have physical indicators it will essentially be just like giving birth to a premature baby who is stillborn.

The OP will be given support to go through it but it won’t be like having a termination in the general sense. It may seem brutal to suggest that but it is the facts.

You basically have 5 options.

You terminate the pregnancy now, withought having further tests.

You wait until tests are done, if there is an abnormality you terminate the pregnancy at 24 weeks later.

You give birth to a baby with a disability and raise the child yourself.

You give birth to a baby with a disability and have the baby adopted (which will probably be harder than raising the child yourself).

Best case scenario, baby is healthy and you go ahead with the pregnancy.

That is not me being unkind, those are basically the only options you have.

There is also kinship care I think it is called as an option. So basically the person has the baby and the baby is then placed into foster care usually with someone who is experienced in fostering severely disabled babies and children. The parent then doesn’t relinquish their parental rights but the FC is also given parental responsibilities in terms of raising the child iyswim.

Hello OP. Did they say it is definitely a problem, or that it might be a problem?

I had v similar at our 20 week scan. Sonographer went quiet for a while and then told us that the baby's bowel seemed 'a bit too bright' - it was written down in my notes as echogenic bowel. I was told it could be a marker for Downs, but I had already had the Harmony so that was unlikely. I was told I would need to see a consultant for another scan.

I came out and cried a lot. I felt very confused and wasn't sure what exactly I was looking at. Looked it up on Google and saw that it could be CF.

Anyway a week or so later I had the scan and had blood tests done for C.F. and for a childhood viral infection. Consultant could see NOTHING wrong with my baby's bowel! She said that because I am slim (I'm not skinny but I am size 8), the ultrasound settings were probably just a bit out for my body. I had another follow up scan with her to confirm, and again there was nothing wrong. All bloods came back clear- although we definitely would not have terminated for cystic fibrosis anyway.

I really hope this story will reassure you somewhat and make the wait more bearable. Best of luck. X

I had a termination at 17 weeks for a baby diagnosed with downs. It was the most difficult decision I've ever made and was the hardest thing I've ever been through. But for us it was the right decision. The hospital I was with had a special counselling service which I used, and they were so supportive when I was sobbing on the phone and when we met in person. Equally ARC as others have suggested really are truly amazing. My husband even spoke to them and found it so helpful when trying to deal with the emotions around the decision we were making. Everything does have to happen very quickly and I think you should try and push for this to be speeded up. Because I was earlier than you, I managed to find a way to have a medical procedure instead of giving birth. I also had a harmony test which is how we found out in the first place. I know you won't have this option if you do find yourself in this position, so please do ask the hospital if there is someone you can talk to there. Maybe you could be referred to a different hospital to speed things up?

Really hope this all turns out to be nothing though and you can enjoy the rest of your pregnancy once this is all over.

If your midwife is off on holiday, don't hesitate to contact the head of midwifery for your trust. Obviously you need some information about this asap given that it's very time-sensitive (yes, you may be able to terminate after 24 weeks, but clearly it would be much better to be able to know and make decisions as soon as possible!). I'm sure they'll be happy to help, or put you in touch with the right person who can.

How do you know you couldn’t cope? You could have perfect scans and give birth to a baby with cerebral palsy or autism, you just never know. You’d be surprised what you’re capable of.

Was it echogenic bowel or bright bowel? I had this on the 20 week scan for my first. The wait for results was awful but I now know that although they test for various things, most of those things are highly unlikely without more “markers”. I worried so much about the more serious disabilities like Edwards and pataus without realising that the chances of those with just the bowel marker were extremely slim.

When I spoke to my consultant it was clear he was only really worried about cystic fibrosis in a worse case scenario, or a twisted bowel loop (which can be fixed by a small op at birth). Cystic fibrosis and Down’s syndrome were both conditions we felt OK with and so termination was not on the cards for us. I think /hope that a cure will be found for CF in the next 10 years or so. And for me, although Down’s wasn’t what I had planned, I was happy with that path if that was the path we were on. However, I do remember chasing for the results and the midwife / nurse telling me that the “procedure”, by which I assume she meant termination, would be the same whenever it happened.

As things turned out it was none of those things and I have a perfectly healthy 6 year old.

Friend was told baby 100% had downs and was sign posted to support groups etc by midwife. Baby was born absolutely fine. I wouldn't take the risk of aborting.

My DS had echogenic bowel show up at his 20w scan, I was in bits and very much thinking the worst. We had already had the harmony test which was low risk. We both had genetic tests for CF which were clear and I was also tested for Toxoplasmosis, CMV and something else which I can't remember. It turned out I had recently had a CMV infection but it wasn't a primary infection. DS had to be tested for congenital CMV when he was born but thankfully he was clear and is now a very healthy 9m old.

The wait for test results was excruciating and I kept playing out all the worst case scenarios in my head over and over. The antenatal screening mws were great and I spoke to them a few times just as I needed to keep talking it through so I'd definitely recommend doing that if you need.

We too discussed what we would do if it became apparent DS would likely have disabilities and came to a similar decision to you...You have to make the right decision for you and your family. I really hope that everything turns out ok for you. Here if you need to chat, I've been in your shoes not long ago and it's awful. Big hugs