Duodenal atresia- downs risk

[worried12E45]

I am so so worried and looking for any advice. I am 36 weeks pregnant and last week had a growth scan after measuring small. Baby was indeed small- abdomen in particular. Scan yesterday with a specialist shows Duodenal atresia as well as small baby, smaller than initial scan, and I'm told Downs risk in 30%.

I had a very low risk combined test, and I cant understand how I'm in this position so late on. I'm having an amnio tomorrow with results in a few days, but I'm scared that at this late stage there is no option now for a termination. Specialist didn't mention it at all. Is it too late?

[jena19]

hi dear .. sorry you r in this position ,, i had termination at 36 weeks due to another condition picked up at 32 weeks and it was completely devastated because it happened at the end .. i don't want to make my replay long but they offer termination at this stage ,unless you will be in labour they will not do anythings ,, i hope your baby will be fine and every thing will be clear just mention your worries to the doctor or the midwife as soon as possible ,, best of luck ,,

[Gilbert82]

The combined test is not diagnostic, it’s a “risk” ratio and sometimes you will end up being that 1 in however many thousands.
Please don’t be scared or worried about having a baby with Down syndrome, my little one who happens to have DS (postnatal diagnosis) is the best thing to have ever happened to us! Feel free to message me if you have any questions and I hope you get the results you’re hoping for x

[worried12E45]

@jena19 Thank you, I'm sorry you also had to go through similar worry- I'm hoping the amnio is clear and will ask about options. But have to wait until the end of the week for the results and I'm so aware that time is ticking. It just feels like it's come out of nowhere after normal 12 and 20 week scan, everything else fine.

@gilbert82 I guess it was just so low risk I thought it wouldn't happen, I wish I hadn't been so naive about that. I don't mean to be insensitive, I'm sure your little one is a joy, it's just so scary feeling like all the choices I would have had earlier are now gone.

[Gilbert82]

Not insensitive at all I appreciate it must be a worrying time for you. I just wanted to say it really isn’t the end of the world that a lot of people seem to think. As I say I am happy to answer any questions you have and I do hope all turns out well for you x

[worried12E45]

I had the amino today and spoke to the doctor who was not very reassuring about options, saying that a termination would usually only be available in situations incompatible with life at this stage, but that she could refer me for consideration if positive and this would take time and would not necessarily be agreed.

I don't take this road lightly and I am devastated to even be contemplating such a dreadful situation. I think risk is now considered over 30% as compounded by small size. I expect the results end of the week but I am desperate, and time is running out if I get a positive. Does anyone know who else I could contact? Has anyone else been in this position and it been ok? Would private providers such as bpas be worth a try? Please help

[Robs20]

I’m so sorry you are going through this. I had a similar experience- easy pregnancy until growth scans at 36 weeks raised some concerns. Dd was born with lots of health issues (much more severe than expected) and sadly died.
What are you looking for advice on (I don’t mean this in a rude way, just wanted to know how best people can support) - is it how to get through this? Are you looking for comments re the option of termination?
Unless you get a firm diagnosis I have heard so many stories of a) low risk pregnancy where things go wrong b) higher risk and baby is totally fine. Re termination, I think you might be right about it normally only being offered for conditions incompatible with life (especially at this stage) but someone else may know better.

[sheshootssheimplores]

OP I’m so sorry. I can completely understand your panic. I have no idea about the options you have at this stage but I just wanted to offer a hand hold.

[GiveMeHope103]

I'm so sorry you are going through this especially as time is ticking by. I went through a tfmr last week at 22 weeks for an issue picked up at our 20 week scan. When do you get results back?
It's so hard to think of this, but what would your options be if they came back with confirmation?

[worried12E45]

Thank you @sheshootssheimplores and @Robs20 for your supportive replies, which really helped me last week.

I’m sorry @GiveMeHope103 that you were faced with similar recently. It really was the worst thing to have to contemplate. I can only imagine how you must be feeling.

We had our results on Friday which thankfully were clear however our baby hadn’t grown at all in the previous weeks and so I had to be induced there and then and baby girl was born on Monday, small and with some other problems but mostly ok. The doctors said that if the test had been positive there would have been the option of a termination and it would have been within the law.

I’m not sure what we would have decided in the end but the pain of not knowing and being put in that awful situation is something I wouldn’t wish on my worst enemy.

[Robs20]

Hi OP, huge congratulations on the birth on your baby. How are you and she doing? It sounds from your latest post like her complications weren’t as bad as expected? Are you at home now?

[worried12E45]

@Robs20 thank you! We are both doing well and we are going home today. All things considered things could have been a lot worse, so I’m very thankful.

[GiveMeHope103]

I'm so glad everything worked out for you op. Just enjoy your precious dd X