Devastating anomaly scan - please help

[Cantdothisagain]

This might get too long - I hope someone will read and reply!

I am 20 weeks pregnant and the anomaly scan showed very low amniotic fluid and probably no kidneys, although the view was very poor so we're being sent to a fetal medicine centre on Wednesday morning for another look as our hospital couldn't be sure 100%. Anyway I know the prognosis for either almost no amniotic fluid or no kidneys is very bleak. Has anyone been through this?

We have one DC already of 2, and lost a baby last year to a chromosomal disorder at 13 weeks. I am already facing up to the horror of termination because if my hospital is right and the baby has no kidneys, this condition is always fatal.

I have told nobody about this pregnancy except our parents because the last pregnancy was so traumatic and I've been so anxious over this one, although I relaxed stupidly after the 12 week mark. Luckily I've managed to conceal it despite reaching 20 weeks - it may be the lack of fluid that is making me not show, I now realize, though I was the same with my 2 year old so the small bump didnt concern me.

Anyway I am obviously facing time off work, and my work is the sort of place where people gossip. My boss is utterly indiscreet and tells everyone everything. I can't bear people knowing and saying consoling things; I know from last time I just need to grieve at home. Would my GP write me a sick note that wouldn't say what was going on, does anyone know, or would she not be able to do that?

I can't believe this is happening. The consultant insists there's no link between kidney failure and the chromosomal problem we had last time. But as I said I'm seeing specialists on Wednesday. I am part numb and part just want to lie down and howl. But I'm trying to keep it together for my 2 year old who needs me.

Please be gentle with me....

Oh you poor, poor thing, my heart goes out to you. I haven't been through your experience but I know there will be some amazing women on here who will be able to offer their support. You certainly have been dealt the cruelest of blows after last year. Be very, very kind to yourself, nothing you are feeling is wrong. An enormous hug to you.

So sorry to read this

I don't have any experience, sorry, but didn't want you to wait for a reply.

Maybe your GP could just sign your sick note with stress or something similar?

Thinking of you x

Oh you poor thing, I'm so sorry, I haven't really got any advice but couldn't read and not post. I hope you do get some good news on wednesday.

Hope you get some answers soon. So sorry you are going through this

so sorry to see your post
I would see the gp explain the situation and ask them to put stress on the form they should do this for you
I hope that your visit to the fetal medicine centre isn't too awful
I really feel for you

How awful for you

If it is the worst news then I would ask if your GP could sign you off due to 'bereavement' I think. You can then simply hand that in to work and say you have lost somebody very close and you don't wish to discuss it any further. They should offer you any necessary workplace support and support in your return to work but as a manager I would say we certainly don't have to know all the ins and outs of a situation to be able to do that.

It's your news and you tell who you need in order to deal with it. It isn't stupid at all to have relaxed - a good 12 week scan is a very good sign and it's desperately unfair that you are now facing this. You do know, don't you, that you have not done anything to cause this?

I'm so sorry, I have no experience of this, but your GP should definately be able to write you a sick note with something extremely vague on it. See a sympathetic GP as it can be horrible - I had a sicknote written for me when I was pregnant and had been bleeding and the doctor wrote "threatened abortion". I was horrified and asked him to change it and he wouldn't - nobody at work knew about the pg. I changed GP surgeries immediately.

So sorry you're going through this, I hope you get good news at your next scan. I have read of someone else on here experiencing this, they did opt for termination I think. I knew someone with fairly strong religious beliefs who carried on with the pregnancy and delivered the baby, though it had no chance of survival as the lungs don't develop properly due to the lack of amniotic fluid.

I do really hope this isn't the case for you and that the followup scan provides you with some good news.

Agree with northerlurker, get your gp to sign you off for bereavement. If the worst does happen can you get someone else to ring in to work for you so you can avoid having to answer any probing questions from your nosey boss?

So very sorry to hear you have to go through this - I cannot begin to imagine how this must feel. I don't have any particular experience with this, but have been scanned at the fetal Medicine Centre in London (with Dr Nikolaides) and I am assuming that this is the one you are talking about - if so, the are fantastic. Dr N only scans on Wednesdays and so it can be very busy and you might wait a while as they are very, very thorough ( I had a 20 week scan that lasted nearly 45 minutes!) - so my advice would be to arrive at the requested time and check in, and then take a wander off for a cup of coffee ( Marylebone High Street is not far) and then come back with a book or something to pass the time as you might well wait up to 2 hrs before you see him.
The dr can sound a bit brisk, but that is just his Greek manner - you could not be in better hands -
My heart goes out to you.

I'm so sorry

please do as the others have suggested and explain the situation to your Gp, they will know what to write

i think that probably "bereavement" is not an illness and would require you to apply for compasionate leave from your employer. so best ask the GP

we had a child dying in hospital when i was pg and the Gp just put " stress" as my line manager wouldn't allow me time off

I am so very sorry, how dreadful for you. Your GP should put down stress or bereavement for you on your sickness form, whichever you prefer. I was signed off for stress when I miscarried.

If your clinic hasn't already given you their details, you might want to contact ARC www.arc-uk.org/ or 020 7631 0285 who are a charity that provide support to people who are going through what you are.

Cantdothisagain - am very sorry you have to go through this.

Your GP will be able to put 'stress' because that is exactly what you have [to put it mildly].

I guess take a huge deep breath in and wait till Wed, to get the expert opinion and clinicians scan.

Be very very kind to yourself, and do what you have to to get through to Wedensday. Dark days for you, you can vent, talk, off load and have listening ears here on mn.

Thank you all for replying. I am sitting crying at the computer because kind comments seem to have that effect!

Riven, yes, I have googled too and it probably is Potter's syndrome. I know some people would wait for the baby to be born and die and I respect that but I don't think I can do that. I am sorry if that offends anyone and I have googled and know that some people, mainly in the US, have continued the pregnancy and then cuddled their babies once born as they die. They inevitably die because their lungs can't develop.

Thank you all for the advice. I am reluctant to have the GP write stress because this means I get sent to Occupational Health (automatically) and I can't face that. I don't know what else a GP could legitimately write though in the circs. My GP is nice, in fact, having had to see me through excessive bleeding following my last loss...

hope everything goes well 4 wed fingers crossed 4 u my sister in law had same thing and also bled right the way threw she delivered at 27 wks now hes nearly 3 bright as a button well advanced and a complete joy so try not worry 2 much (i know easier said than done)but good luck xxx

I'm so sorry to hear this.

When I was off work due to Antenatal Depression, which I didn't want my whole office to know about, my GP put down 'investigation of medical issue' on my form. No one at work questioned it.

You can get signed off without any mention of what is wrong.

The GP signed off DH to be with me and didn't state anything medical.

So sorry to read your post.

As a line manager, I am not automatically entitled to know what is the matter with my staff, but they can discuss with Occupational Health confidentially who will liaise with me to ensure return to work / fitness to work is properly managed. I'm sure the GP will be sympathetic.

Fingers crossed for Wednesday for you x

Poor poor girl - I am reaching out to you and can not begin to imagine the distress you are in.
In the end, once you have a final diagnosis, you will have an enormous emotional journey to go on and there will be dark days.
I have had two terminations for fetal chromosomal abnormalities - not the same and not fatal. But I have found such enormous support and comfort in the - ante natal choices and testing topic in the pregnancy section. I think it may have saved my soul in fact.Reach out to whoever and whenever you must
Thoughts are with you

Just wanted to say how sorry I was to read your post and that my thoughts are with you.

Oh sweetheart, i am so so sorry that you have to go through this.

I have been through something almost similar to you, and if it'll help i'm happy to share my story.

I got pregnant with triplets in 2004, and sadly lost one at ten weeks. At my twelve week scan there showed that one of my remaining babies might have a hernia on it's umbilical cord - but obviously at that gestation, it was fat too soon to be sure. I was booked for another scan at 14 weeks, and my consultant wasn't very happy so sent me to another hospital for a more detailed scan the next day.

The scan showed that one of my babies had a condition called Posterior Uretheral Valves, which means that he (it only affects boys)did not have an opening going from his bladder to his urethera so he could not pass urine.

After about 16-18 weeks, unborn babies make their own amniotic fluid, and they do this by drinking in whats there and passing it through their bodies and weeing it out. They also practice breathing with it.

Anyway, the condition that Ciaran had meant that he couldn't wee out, and although his kidneys were making urine, it was simply backing up into his kidneys and he would have had severe renal failure when born, leading to him needing a transplant as soon as was possible.

Also, because he couldn't wee, his lungs were very underdeveloped, and he wouldn't have been able to survive.

Now, here's where my situation differes from yours, Cantdothisagain, in as much as because i was carrying twins i had to think of our other healthy baby, and had to continue with the pregnancy. I did however consider on more then one occasion, putting Ciaran 'to sleep'... it felt like it would be cruel to give birth to him, knowing that to do so would mean he had to die.... but i don't regret any decisions that we made then.

My beautiful, precious boys were born early at 28 weeks, and Ciaran lived for an hour and 42 amazing minutes. He fought so hard to be here, snd to stay with us, and he was so perfect... but it just wasn't his time. I don't regret for one minute having him... not even all the times i'm tormented with the 'what did i do to cause this' questions..

I guess what i'm trying to say, Cantdothisagain, is that firstly... don't rush into any decisions... take time to let this sink it. Secondly... make the best decisions you can with the information you have at the time.

I'm so sad for you that you have to go through this, sweetheart... it really is truly awful.

Please know that we are all here to listen whenever you need to talk xxx

Thanks for the helpful advice. I do appreciate it.

Lenin, I know I might want people to know and acknowledge. But I have been through th horrible loss once, at 13 weeks, and I just find it easier to work without people being sympathetic and curious. I suppose I'm quite intensely private, although I'm not antisocial - I'm a chatterbox really!

Pinky, I am delighted for your sister.

I don't think I've been leaking amniotic fluid though or surely I would know. I have had an awful lot of discharge but again I did in my first pregnancy...