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Amnio fear - Oesophageal atresia, polyhydramnios, fluid in kidneys

(12 Posts)
Kara12 Mon 12-Feb-18 19:52:56

Hello. Just looking for some advice I'm totally new here. I'm almost 22 weeks pregnant with a little boy. We've had a terrible time so far. Baby is measuring a little small, has high levels of fluid in both kidneys almost 10mm in each and his stomach isn't visible indicating Oesophageal atresia which will lead to polyhydramnios. We're heading to foetal medicine next week for a more detailed scan. The worry I'm having is they keep pushing the amniocentesis on me saying this could be soft markers for chromosomal problems. The consultant said she thinks it's unlikely as there's no other indicators so I don't understand why they keep pushing me to have an amnio? Would appreciate any advice xx

YearOfYouRemember Mon 12-Feb-18 19:58:44

Not quite the same as my diagnosis for polyhydromnious wasn't discovered until they started my c section and I flooded the theatre. I had been awaiting OC test results but the scan sounded the alarm. Baby wasn't breathing on delivery but is now totally fine. Be prepared for baby not crying if you have a c section.

If they carry on pressuring you to have an amino as them why they are doing so.

What are they testing for? If baby proved positive what would be the gain of knowing now?

Ultimately you have to listen to the medics as they are trained but he is your baby and you have to make the decisions you can live with.

Windowgazer123 Mon 12-Feb-18 20:04:09

I'm sorry I don't know anything that would prove useful about this area. I'm 16 weeks
pregnant with my first only.
But I wanted to say, it sounds incredibly stressful and I really hope it all works out (and that some other better informed people come along soon.) best of luck.

Kara12 Mon 12-Feb-18 20:38:18

Thanks for the replies x

See that's what we've said, what are they gaining? We've told them we wouldn't terminate if he has downs or anything so I don't know why they keep pushing it. It's making me wonder do they think there is something? Or are they just trying to rule it out. I'm terrified of the procedure it looks horrible & also I don't want to risk losing him just to know.
It's extremely stressful, I'm constantly crying I can't sleep or anything, just so scared of what's going to happen. All I can think about is this tiny baby will probably come early, need his operation then on top of that is he going to have some sort of chromosomal disorder. I've considered the harmony blood test but it's so expensive.

CommanderDaisy Mon 12-Feb-18 21:01:23

Could it be to help them determine what is exactly wrong, so the baby can be supported at birth? I'm not a medical person but have experienced this situation.

I had a pregnancy where the scan revealed deformities, and went on to have an amnio to find out what exactly was wrong as strongly recommended and insisted on by the doctors. The results determined Trisomy 18 which for us would have changed where I could deliver due to the level of care required after the birth. At 22 weeks we decided not to continue with the pregnancy as the child's life would have been brief and filled with pain. He would never have left a hospital, and I would have had to relocate a considerable distance for the period of his life with a 2 year old in tow, anad a husband unable to come with me.

If it has a chromosomal disorder as well, could it alter the level of care required at birth? Maybe the amnio results could help the baby after birth or even during the pregnancy? Like I said, I'm not a medical person but that might be why they are insisting?

I'd ask questions along those lines, and consider if that is why they are insisting. An amnio isn't painful , and the risks are there but fairly low. Ask them for their reasons before dismissing it, or pay for the test.

I feel for you, and send you random stranger flowers

lucy101101 Mon 12-Feb-18 21:07:07

Can I suggest you speak to the charity ARC:

www.arc-uk.org

They helped me make difficult decisions when I faced some issues around tests.

I can also highly, highly recommend the FMC:

www.fetalmedicine.com

If you want a second opinion.

I am wondering whether there might be a less invasive test which could give you further info. ? I don't know if it is too late to have the blood tests (Harmony etc.) but in the scheme of things the expense might be worth it?

A private amnio with a very, very experienced dr (if you can afford it of course) might be an option too?

Take care and hoping you get better news.

Kara12 Mon 12-Feb-18 21:29:41

Commanderdaisy thanks for your reply that was actually really helpful. Maybe it is for those reasons just to support the birth process. So sorry to hear about your loss, it must be heartbreaking. I think this is what scares me too, if I take the test and get bad news. Maybe I'm being selfish I don't know. I'm scared incase I take it and everything comes back fine and I end up losing him from the test. I'm also blood group rh O- so would need an anti D. Dad is +
I just don't know what to do. I think deep down I don't want the test and neither does my partner but part of me worries if I'm doing the right thing by the baby or being selfish x

Kara12 Mon 12-Feb-18 21:31:33

Lucy thank you. I will definitely have a look. I'm hoping there might be something less invasive trying to do some research tonight. I said to the consultant if you were to say to me look I think there might be something I'd maybe consider the amnio but she says she thinks it's unlikely. I just don't get why they keep pushing it if it's unlikely x

CommanderDaisy Mon 12-Feb-18 22:05:33

Kara you're welcome.

Pin the doctor down and ask why they are so insistant. If they have a genuine concern that there are additional problems or it will be helpful for the baby, be brave and do the test. If they can't give you any good reasons, don't.

Some things chromosomally are incompatable with life ( like in my situation) and I felt I would have been selfish to continue the pregnancy. I was also very honest with myself and knew I did not have it in me to go through the period of time after birth , till the baby died. While the termination was awful, I knew it was the right decisionn for me.

I am O- too with a Dh who is 0+ and had the Anti D-shots with all my pregancies and nothing adverse came of it.

I actually had to have a CVS test with my next pregnancy , and that has a higher risk of miscarriage than an aminio ( I think). Everything was fine.

Research and ask heaps of questions, then decide.

Much love.

Windowgazer123 Mon 12-Feb-18 22:31:05

Are you based in london or near? Kings hospital offer the Harmony test if combined risk assessment at 12 weeks is high. As do queen Mary's I believe.
Kings is well known for fetal medical research.
I'm wondering if there is a way to get a harmony test done..

Windowgazer123 Mon 12-Feb-18 22:32:21

Ah apologies, reading the attached it seems you can't have a harmony test at Queens.

YearOfYouRemember Tue 13-Feb-18 13:35:25

We were also encouraged to have an amniocentesis as they were querying Edwards Syndrome - oops, not the baby in my first post, - and he had problems with his brain and kidney but we refused as we were having the baby regardless. Aminos can cause miscarriages and I wouldn't have had a termination so no way was I having one. Baby born and he's fine so I could have lost him for nothing.

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