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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Suspected Edwards syndrome

96 replies

Sid79 · 16/01/2018 09:19

Hi, I'm 20wks+6. Can't believe I've signed up to this site and am posting a thread. However have read many posts and found useful in past and now need help from anyone that has been in similar situation as me.
Went for 20 wk scan yesterday which took a very long time but basically markers of Edwards syndrome identified which alongside my 1:5 risk already identifies ties from bloods has suddenly rocked mine any husbands world. Can't believe how everything has just changed in the space of one day. Have been called back to see consultant again later today as was very upset and in state of shock yesterday. Have been googling most of the night which I know is not the best thing to do but needed more info. Our baby girl has been identified as having a strawberry shaped head, some cysts on brain and problems with heart. Have read many sites which state usually end up in miscarriage, stillbirth or babies die very shortly after (without going into too much detail).
Basically hard coming to terms with this but do not want my baby to suffer. Understand some people have terminated but some part inside of me (inc beliefs is opposed to this). Basically want to know if anyone is similar situation as me miscarried naturally and if so at what week? This is baby number 3, have two teenage boys and although unplanned I had so many plans for this baby. Everyone was so happy inc myself that I would be having my own little baby girl. Also worried about the effect it will have on my boys- we haven't told them anything yet. Can't stop crying and am sure anyone in similar situation will understand how I am feeling. X

OP posts:

2018SoFarSoGreat · 04/03/2018 14:28

I shall say a prayer for beautiful Rania. And for you.

I don't really say prayers, but that feels right here. 💐

BonnieBlueButler · 04/03/2018 14:28

What a beautiful name. Your pain is palpable. I’m in tears reading your story; I cannot imagine how it feels for you.

I’m so sorry that Rania was so poorly. I’m glad you have shared your story and to have read about her. She existed and you loved her and still do. She’ll always live on in your hearts.

I wish I could offer more than words.

Wonkydonkey44 · 04/03/2018 14:32

So sorry for your loss ❤️

ANewHope18 · 04/03/2018 14:42

I am so very sorry for your loss. I lost my little girl at 13 weeks in January following a diagnosis of Edward's Syndrome. The 12 week scan showed a number of issues and a CVS confirmed the doctor's suspicions. We chose a tfmr and it was an awful time.

I don't know how I would have coped with a later diagnosis. You are so strong and please do talk about your daughter, she was real and yours and will always be in your heart. Rania is a beautiful name.

I am thinking about you and your husband. Please be kind to yourself xxx

Chocolatecake12 · 04/03/2018 15:11

I’ve just read your thread and although I hadn’t read it from the time you first posted I just wanted to say that I’m so very sorry that your beautiful daughter didnt live. You gave her such a pretty name.
Reading about you taking off your hospital band and the feelings that bought you I wanted to suggest that you could get a bracelet that you can always wear and remember Rania.
How are your boys dealing with the loss? It must be so hard being there for them but feeling so full of grief yourself.
I’m thinking of you and your family. Xx

Herecomesanotherone2018 · 04/03/2018 15:26

I'm so, so sorry for your loss

AmIdoneYet · 04/03/2018 15:36

You have a daughter, not had. And one day your souls will be reunited. Until then it's going to hurt, but one day you will find a way to cope with that hurt a little better. For now just grieve and take as long as you need.

I'm sorry I have no other words for you, I can't imagine the pain

Original poster

Sid79 · 04/03/2018 17:11

X to all of u who have posted.

I look at my bare wrist and thought of getting a bracelet too. Thank u for the suggestion too.

I also believe that we will be reunited and that that life will be for eternity. X

To all of u who have lost someone special too, I pray that your pain eases too. And to those who have sent their wishes and prayers. Thank u too.

It means a lot to me to be able to share my thoughts here. It is private. It is for me. I know I can share however I feel. X

OP posts:

Cantchooseaname · 04/03/2018 20:21

What a beautiful name.
If your wrist feels bare, could you get a price of jewellery? Something meaningful to you- with a birth stone, or and engraving. Something to keep close.

MollyHuaCha · 04/03/2018 20:27

Lovely name for your beautiful little girl.

Thinking of you and your family. I hope you feel well looked after.

iamloading · 04/03/2018 20:42

I'm so sorry Sid, I lost my daughter at 26 weeks in October after bad news at the 20 week scan so know the pain you are going through. The sands forum has been a lifeline to me - sending you big hugs x

Prettylovely · 04/03/2018 20:43

What a beautiful name, I am so sorry for your loss

Lorddenning1 · 04/03/2018 20:56

I have just read your thread and I want to say my thoughts are with you and your family :( I'm in tears reading your words, your such a strong lady Sid, so sorry you had to go through this :(

Original poster

Sid79 · 04/03/2018 23:54

I don't feel strong at all.

OP posts:

MollyHuaCha · 05/03/2018 14:16

I have no words of wisdom to offer. Just want you to know that someone cares.

Trooperslane2 · 05/03/2018 14:20

Been through similar.

Be very, very kind to yourself and do not rush your grief

Big hugs. I'm so sorry and I'll light a candle for beautiful Rania x

SleepingStandingUp · 05/03/2018 15:17

Was going to suggest a bracelet too, with Rania's name engraved on it, or a tattoo? An outward sign of the place she keeps in your heart?x

Original poster

Sid79 · 11/03/2018 11:07

You know what. Woke up fine. Then I remembered it's Mother's Day.
Didn't hit me too hard but was at some sort of ease accepting what day it was and what has happened.
But then also realised it's 4 weeks today that I went into hospital to be induced. Just 28 days since losing her...
Each Friday I keep thinking it's x days or weeks since I found out I had lost her in my womb, each Sunday I recall going into hospital, each Monday I recall delivering her and all along thinking how fast time is going by.
Why did time go so slow when I was told she had T18 and just painfully waiting and worrying? And now it's flying by? I want time to stand still or go as slow as it did then.
It's like time is going by and everyone is going back to normal and I'm expected to be too. I mean it is getting bearable and a bit easier for me too. The grief is not as raw and I am managing to deal with the pain and loss a bit better. But the loss and pain of losing my princess, my dear daughter is still inside of me. I still think each week she would have been this size inside me, developing like this, or look at people with baby girls and think about how she would have been etc. I feel guilty too.
Now that I am starting to be able to do things like actually make dinner for my family or chat to my family. I keep remembering back to how I was physically and mentally unable to do anything and now feel that by doing things now I'm slowly moving on so to speak and am not honouring her. If that makes sense? Does this make sense to anyone?

At times I'm ok but at times I also feel like I just want to break down, isolate myself from everything and everyone...

I miss her. I wish everything was alright.

OP posts:

welliments · 11/03/2018 17:27

It totally makes sense Sid. I felt terribly guilty that i was ‘recovering’ when my baby would never have that opportunity.

But given time, I began to move into a more comfortable way of feeling about what had happened. I guess it’s called acceptance. I’m still not fully there and I’m not sure I ever will be, but I have come to understand the importance of moving on, almost as much for my baby as for me.

My baby was a part of me and of his twin sister. Everything I do and achieve now is partly because of him. When I am kind to someone, it is because of the trauma I went through. The world is a better place for having had him in it, I am kinder, wiser and a better mum.

You’re still building your strength back up and there is real power in just accepting where you are right now and knowing that things will change.

Lots of love on this difficult day x

Original poster

Sid79 · 11/03/2018 18:09

Xx @welliments. It is exactly that. The 'recovering' guilt. Thank you for understanding and sharing your story x

OP posts:

Original poster

Sid79 · 11/03/2018 18:10

And you are so right about it making us a better person. I totally get what you mean.

OP posts:

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