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....

I am so very sorry for you and your family. All my thoughts and prayers are with you at this time. Please don't feel guilty, and please just give yourself the time and space to grieve.

oh i am so sorry, i have just read the thread through and kept thinking "oh it might be ok" then p3 came and it wasn't.

thinking of you
take care of yourself and your dh,
take all the time off work you need, totally totally irrevelant and unimportant at this time.

Really feel for you and wish you lots of strength.

I am so so sorry
Please try not to worry about the work thing - if there is no other way round it you can tell your boss formally that you do not want anyone else to know and he/she will have to respect that
In the meantime, do as much as you can to look after yourself. This is so unfair

So sorry can'tdothis - its all so cruel . I really hope you are managing with it all but you must be so numb to the whole thing in a way. I've been where you are now for a condition not that dis-similar. At my 20 week scan we had confirmation that our son had severe hydrops and his organs were not developing. Like your baby we were told that he would not survive outside the womb and would probably not make it to term. It was of course a heartbreaking decision and taking those tablets was just awful but I know it was the right decision. I couldn't bear to carry my baby any longer not knowing when he was going to die, and I'd dont think I was strong enough to be able to handle all the typical late pregnancy comments from strangers which are so harmless in many cases but not in ours. I also couldn't/ do that to my eldest son as he would not be able to understand that his brother would not be coming home.

I'll be thinking of you over the next few days and wishing you all the strength in the world. If you want to ask anything about the birth or the funeral then please do...

We had a post-mortem done which you may have as well, and that provided us with the answers we needed and a name for the condition. We also had a 25% of recurrence which just made us all the more grateful for our eldest son. We've since gone onto have another son who is a total joy. Life does go on but I always think of my middle boy and will always have 3 sons.

Chooster, I am so sorry that you went through this. Thank you for telling your story. And thanks to everyone for your support with this.

I am currently thinking I will refuse a post-mortem, because last time it took ages and this meant the service was very delayed and came at totally the wrong time. Consultant on Friday said this problem occurs usually in isolated cases. Consultant today agreed - said very occasionally it is genetic but tis very very rare, and I think if we want to try again I'll find it easier with this in my head than with endless rounds of genetic testing which could make me even more anxious. Both consultants are saying there is no link between this and last time and we've just been desperately and horribly unlucky.

I value my DD more and more through all of this. She is such a treasure. But above all I am currently dazed, a bit zombified in relation to it all. I hated taking the tablet; it made me break down. I suspect the pessaries will be even worse. But I genuinely didn't and don't feel I could carry on to term knowing the baby would die on arrival, and with a 2 year old child already...

i just found this thread and I just wanted to send you lots and lots of love and let you know how amazingly brave I think you are. Please take care and and look after yourself. Lots of love and I'm so so sorry you're having to go through this.

I've just seen your message too. I'm so so sorry, sending you a big hug and kiss. Will be thinking of you and your family over the next few days. Take care of yourself x

Hi Cantdothis

I too am really sorry to hear this. I haven?t been in your position but I am GP so perhaps I can offer a few practical suggestions as I know how much the feeling of people talking about you can add to an already horrible situation.

Please, please talk to your doctor in great detail about this. Let them know ALL your fears regarding people knowing about your situation. Your GP won?t or shouldn?t lie about your condition but if your doctor feels you will be significantly distressed by people knowing and it is not a condition that will effect your work in the long run then he/she can be less specific and more generic about your condition.

For example, if I were your GP (and I?m not so there is no guarantee they will do this) but I would agree to use a term like ?post operative recovery? or something to that effect on the employer?s medical note. You are then under no obligation to disclose what kind of operation you may have had.
If you employer wants to see your medical notes they then need your written permission first.
But in general, if you tell your boss that you are going in for an operation I would be surprised if they seek anything other than superficial details, normally saying things like ?I hope it?s not serious?. In which case you can simply say, I hope not too. If they dig further a simple and polite response of ?I?d rather keep my condition private for now if you don?t mind? normally is enough for people to get the message that you don?t want to discuss it.
Some of my patience have found emailing your boss easier as they don?t wish to be made uncomfortable face to face.
In the worst case, if your doctor is about to write something that you feel breaches your privacy you have the right to stop your doctor sending it to your employer. But this could cause other complications in your work place so be cautious as this may create a situation where you are accused of hiding something and that will only make your situation worse at work. So talk to your doctor. They are there to look after you emotionally as well as physically.

Sorry to be so cold and practical but it's always good to know your options and I do know you will get through this tough time.

{{{hugs}}} to you.....I'm so sorry to read your sad news.

So so sorry. Wishing you all the strength in the world to get throught he next few days

I'm so sorry to read this. You are incredibly brave. Sending you lots of love.

Just wanted to add my sympathy and support as well. Life can be so cruel. Thinking of you at this awful time xx

Sorry to hear your sad news. You are very brave. Hugs to you and your family x

Thank you all for your kind thoughts. I am not brave. I am just dazed and disbelieving. Tomorrow I go to hospital and return without my baby. My only consolation - and it is a consolation - is that I come back to my 2 year old.

Thank you for all your kind words.

cantdothisagain, that's such a devastating thing to have to do. I hope the consolation of coming home to your gorgeous 2 year old will help heal some of the pain. Have you spoken to the hospital about some kind of funeral so you can say goodbye to your baby? Or is it too early and painful for that? You are in my thoughts and prayers.

Cantdothisagain-
I've been watching this thread, and I am very sorry for your loss.
Thoughts are with you. Take care of yourself

Very sorry to hear your sad news. You and your family are in my thoughts. Take care of yourself.

So sorry to hear this and I wish you and your family all the very best. Please take care and hope you get all the support you need. x

Hi, I had this happen to me last November. I was 24wks 3 days when I delivered. The hardest thing for me was taking the tablet to start it all off. Someone sent me some lines from a poem I'd not heard something about Mothers bear pain so our children don't have to. That just about summed it up and helped me take the tablet. I didn't stop his heart first - I just couldn't do it. I hoped to have some time - however brief - with him when he was born, but it wasn't to be. He was stillborn. And actually, that was a bit of a relief in the end as I didn't have to watch him die.

I was offered the chance to hold him, which felt very strange at first, but I'm glad I did.

Delivering a baby which you know isn't going to make it is not easy, but somehow you find the strength.

Sorry if this is a bit garbled, but it is rather difficult. I just wanted to be here for you if there was anything I could help with.

Before it happened I felt quite isolated where I live. But I had not kept my pregnancy secret and people came out of the woodwork to be kind to me. I really could not have got through without the kind supportive words from people I had not really considered to be friends, before. Text was great as you could read and answer at your own pace. I hope you find similar support on here.

I hope you wait till Friday to go into labour and it goes as well as it can. In the meantime, I'll be here for you with any support I can.

I believe taking the tablet is the kindest thing to do - Joseph did not look well when he was born and, to me, it wold have been unkind leaving him squashed and suffering inside.

I don't know if you want to think about it, but you have to decide if you want an autopsy (I didn't) and what to do with his remains.

Keep strong, there are evidently lots of ladies out here who are thinking of you - and if we could do more to help, we would.

x

Hi daftbat, thankyou very much for posting your story and I am very sorry indeed that you lost your little boy. Did Joseph have the same problem as my baby?

I have already decided against a postmortem - I can't see the point and I don't want to prolong everything. But I suspect the doctors may want to change my mind.

I will hold him/her (don't know the sex yet) and I am not going to have the injection either though at 20 weeks, according to my consultant, the baby will most likely be stillborn.

I am preparing to go to hospital now. Thank you to all of you for your kindness.

I wish you the very best and be strong but cherish every minute you spend with your lo when the time comes.

Thinking of you xxx

I just wanted to send my good wishes t you and let you know I am thinking of you xx