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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:

missjulia · 22/02/2018 22:17

I am so so sorry for the loss of your precious girl. All she will ever have known is your love xx

greathat · 22/02/2018 22:21

Just came across this. So sorry for your loss xxx

justme28 · 22/02/2018 22:27

So sorry for your loss

Original poster

Sid79 · 22/02/2018 22:40

Thank you so much for all your love despite not knowing me your sentiments are appreciated. Cannot explain in words how I feel.

OP posts:

SleepingStandingUp · 25/02/2018 10:21

Oh Sid I'm so sorry, I so hoped you would get a chance to meet her in this life x

Twitchett22 · 25/02/2018 10:50

I've only just seen this thread and I couldn't read and run. You are an amazingly strong woman to go through all of this and, although I don't know you, I feel genuinely heartbroken for you and your baby girl. Take all the love and support from your family and grieve however you need to

Original poster

Sid79 · 04/03/2018 00:38

I'm sorry. I need help. Have been feeling a little stronger this week but all of a sudden just lying here and felt grief overcome me. Don't even know if that makes sense. Literally don't know what to do. Hubby is at work. I have lots of family and friends support and hubby is amazing. But right now feel like I need help. The first two weeks I felt so down, low and wanted to isolate myself from everyone. Didn't feel hungry at all, just empty and nauseous. felt guilty about eating, smiling or doing anything. Then thought about my family and my two boys and had to be strong for them. Slowly felt better this week, that's not saying I didn't have my ups and downs. I know everyone is going to say this is normal and part of the grieving process. Even saw my consultants at hospital yesterday who said counselling will definitely help me. But I need some help now from someone who knows what I'm going through.
At first, I couldn't eat. There was no hunger. Simple. Then there was guilt for eating. Foods reminded me of my cravings and other foods which have I couldn't tolerate during my pregnancy made me feel immensely guilty for eating now. Can't really explain properly. But now for past two days am eating rubbish. Eating for the sake of eating. Even when I know not hungry. Binge eating. Feel so rubbish and don't want to but can't help it. Why am I doing this?

OP posts:

Sophia1984 · 04/03/2018 00:52

I’m so sorry for your loss Sid. I can’t speak from experience but didn’t want to leave you unanswered in the middle of the night. It sounds like it’s not only you grieving for your daughter but also making huge adjustment to no longer being pregnant. Would you like to talk about your daughter? X

Original poster

Sid79 · 04/03/2018 01:06

I've also just cut off my hospital band. For me this is a big thing. Had kept it on since I gave birth despite people asking me why I hadn't taken it off. For me it was a reminder of the last time we were together, that she was inside me and beside me. Yeh last moments we had together. I wanted to preserve that time by keeping the band on for as long as I could. For the past few days though I have been worried as I could see the writing with my details fade and knew that I needed to remove the hospital and if I wanted to keep it safe with my other memories. Have just taken it off and put it away but my wrist feels so bare and I feel like I have lost something else too. I know I might sound crazy but to me it makes perfect sense. Feel so bare.

OP posts:

halfwitpicker · 04/03/2018 01:14

Oh wow, sid. I can totally understand how you feel the way you do about the bracelet. It's important that you keep things for memories.

Just to let you know that people are here for you, holding hands

FellOutOfBed2wice · 04/03/2018 01:34

I’m sorry OP I don’t have any experience with this but I just wanted you to know that I’ve read this thread and your story has touched me: I’m so sorry for what you’re going through. Wishing you all the love in the world.

Original poster

Sid79 · 04/03/2018 03:34

Thank you sophia. I think you are right. I am grieving for everything. My daughter. My loss of her, my pregnancy, my dreams.

OP posts:

Original poster

Sid79 · 04/03/2018 03:37

And thank you to all of you who have replied. It means a lot.

OP posts:

DirtyThirties · 04/03/2018 03:54

Sid I am so so sorry to hear about the loss of your daughter. Grief is horribly confusing and it's impossible to know how you will feel from one day to the next, but it's important to let your feelings out. I have no words to help, but you are in my thoughts

2018SoFarSoGreat · 04/03/2018 04:19

Oh Sid. You poor thing. Your heart is broken. You've been so strong and now you are broken.

Let yourself grieve. Let yourself heal. Take it slowly.

Hugs and 💐

welliments · 04/03/2018 06:42

I understand. I have been there. Grief is shattering. It takes time to put the pieces back together, and even then, they are never all back where they were before. Life will not ever be the same again but one day you will feel like you again. You will be able to eat, to laugh and smile without feeling guilty. I promise you.

In the meantime, every minute and every hour that passes is a step towards that. And it is a step towards a place where you can feel happy to have been blessed, even for a short time for your baby girl. You’re not moving away from her, you’re moving closer to her. She was pure joy, she only ever knew the warmth and comfort of you and your immense kindness to make sure she never suffered.

You’ve got this xxx

Anya1981 · 04/03/2018 06:45

Oh @Sid79, what a heartbreaking story. I am so sorry for you, and the things you are going through!
I can empathise a bit, as went through something similar, with T21, however this was picked up at 12 week scan, and I only carried my baby to 17 weeks. I can completely understand though what an utter shock this is, what a strain it puts on your family, and how awful it is to have to deal with it afterwards.
Please do not feel guilty for how you are feeling now, don’t feel like you have to justify the way you’re processing it to anyone. If you don’t feel like eating - don’t, if you feel like eating crap - do. However it does sound like you might need some extra help from a professional, to stop you slipping into depression. Don’t be hard on yourself though, you are not only grieving a massive loss, but also going through all the post-labour emotional rollercoaster. Your body has been a washed with pregnancy hormones, and now it needs to sort itself out.
You speak a lot about your faith and religion, have you perhaps got a friendly vicar, or another person from church, you could talk to? Someone who is not your family or a close friend? As amazing as my family and friends were when I was going through my loss, I found talking to people who were not as emotionally invested in the situation as them much more helpful.
Massive hugs x x

wtffgs · 04/03/2018 06:49

I am so sorry Sid

Cantchooseaname · 04/03/2018 07:34

Please be kind to yourself. You have been through so much. It’s ok to be angry, sad, upset, and every other emotion. It’s ok to begin to find some peace- that doesn’t make your pain and love any less.
It’s a very hard road ahead. I had a miscarriage- nothing like the trauma you have gone through. But it’s still hard.
Due date, holidays, everything.
Don’t expect yourself to be fine- let others help. Maybe some talking therapy?
The pp who said your baby only ever knew your love, warmth and security was right.
Hoping you find some peace.

kirkandpetal · 04/03/2018 07:48

Have read to ur whole thread and so incredibly sorry for your loss and the heartbreak you are facing. What was your daughters name?

Happies · 04/03/2018 08:04

Very sorry for your loss 💐

Chrisinthemorning · 04/03/2018 08:15

I’m so sorry
I had a tfmr due to t21, only 13 weeks but I understand the bone numbing grief. Take care

Original poster

Sid79 · 04/03/2018 13:20

Thank you to everyone who has posted. Ur words mean a lot and do make sense to me. I understand this is all part of the grieving process but grieving is so hard. The pain is so hard. The process is so hard. My faith is important to me and that's what has kept me going. The contact from the hospital chaplain is amazing...

I named my daughter Rania. It means queen. She is my princess and always will be. A big piece of my heart is with her. I know in time things will get easier but also know I will never be the same person again. And i don't want to be. This pregnancy and my daughter has changed me and I will always treasure the fact that I had a daughter.

OP posts:

kirkandpetal · 04/03/2018 14:07

Rania - ah, that's a beautiful name for a very special little girl. X

JediStoleMyBike · 04/03/2018 14:19

I am so sorry for your loss. I can't even fathom how it feels nor offer any good advice but my thoughts are with you and your family. Rania is a beautiful name

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