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Find support and share your experiences on our Miscarriage forum.

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Find support and share your experiences on our Miscarriage forum.

Miscarriage/pregnancy loss

Edwards syndrome

121 replies

KittyandTeal · 19/01/2015 20:03

We found out today, after an agonising 5 days, that our baby girl has Edwards syndrome.

I am 22 weeks and booked in the the termination injection at kings tmrw morning. My local hospital will induce me on thurs.

I'm not quite sure why I'm writing this. Maybe to acknowledge it a bit more. We have wonderful support in friends and family and a beautiful 2yo dd.

It just feel so unfair. Tmrw I have to say goodbye to my baby. Can't get my head around it.

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howtodrainyourflagon · 29/01/2015 22:50

I'm sorry for your loss. You and Rose are in my thoughts and prayers.

KittyandTeal · 30/01/2015 12:50

Oddly enough I'm sleeping really well.

Usually sleep is the first thing that gets effected with me so I'm surprised.

Saying that I've been having some odd and sometimes upsetting dreams.

I think, on top of everything, I'm getting ill today. Headache, sore throat and shattered. Just finished antibiotics today too!

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HumphreyCobbler · 30/01/2015 13:52

hope you don't get ill! You have enough on your plate atm.

Glad you are sleeping.

Greyhound · 30/01/2015 16:34

So sorry about Rose.

I miscarried a baby with Patau's Syndrome (Trisomy 13) and it was the worst thing ever :( People can be insensitive, can't they?

I couldn't even bear to find out the sex of my baby, so I called him / her a neutral name. Rose is a beautiful name.

ProbablyMe · 30/01/2015 17:07

Sorry to hear you're feeling poorly kitty, hope it doesn't last too long. My sons have kindly passed their "man flu" on to me and the coughing is not helping at the moment. Feels like the universe is kicking me when I'm already down.

Take care of yourself x

KittyandTeal · 30/01/2015 19:59

Oh probably how horrible for you. I know what you mean about being kicked when you're down, I keep getting that feeling, that and anger.

Weirdly it's all mixed up with seeing the positive side of things much more. I suffer from depression, everyone is worried this will trigger another depressive phase. I'm not too worried, I feel like I'm more able to see how lucky we are. Obviously I don't feel like that all the time but it's an odd feeling.

Those of you who have been through this and are a little further down the line, can I ask a weird question? If you already had DC, or when you did have them, did you start feeling more anxious about them and their well being etc? I ask because I used to be of the 'she'll be fine' thinking, I never worried about dd1 when she was ill or when she hurt herself etc. I now find myself feeling more and more anxious about her, I'm getting neurotic about her on our new wood stairs (she's 2.4yo). This afternoon my mum text me saying they're taking her to the aquarium tmrw while DH and I go out. I know she loves seeing the fishes and loves spending time with my parents, I've never worried about her before but my first though was 'I can't let her go, what if they have a car crash and she dies'

Now I know that I'm being ridiculous, I know she'll be fine. I think I'm more worried that that was my first thought rather than the normal 'she'll love that!'

Not sure if I've explained myself properly.

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ProbablyMe · 30/01/2015 20:33

Depression worries me too - I had post natal depression with my sons and was on medication until about two years ago. My youngest DS is 11. That's a sad thing to say isn't it? He's not my youngest, but he'll never know his baby brother.

I've also wondered about the anxiety, I've been anxious about everything - if we're in the car I worry that other cars are going to hit us, my DS had a bath earlier and I had to keep checking he was ok until he told me to leave him alone to get on with it, the world just feels like a scary place to me now.

KittyandTeal · 30/01/2015 20:58

It's a horrid feeling isn't it? It seems very much like anything can happen now. All those things that I naively thought would never happen to me all seem like a scary reality.

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HumphreyCobbler · 30/01/2015 22:40

I did not have other children but I did experience a massive increase in anxiety for a while. The whole 'bad things happen to other people' mindset had disappeared. The worst thing HAD happened. But this heightened anxiety didn't last long, although none of us are ever the same after losing a child, a more rational mindset returned.

KittyandTeal · 31/01/2015 12:06

I'm sorry to hear that Humphrey.

I'm hoping a more rational thought process will return soon. Waved dd off this morning and I know she'll be fine but I think being away from her is making me anxious.

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HumphreyCobbler · 31/01/2015 20:33

Hello Kitty, I should make it clear that I didn't have children at the time I lost my first son, I went on to have children.

I hope your day has been peaceful X

KittyandTeal · 01/02/2015 09:11

Sorry Humphrey, not reading it clearly!

Another personal question, please don't feel you have to answer; did you find your subsequent pregnancies very anxious or worrying? I know we want another, number 3 now I guess, I also know we're no where near ready. I'm scared about how stressful the next one will be.

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HumphreyCobbler · 01/02/2015 17:51

It was stressful, but I had brilliant support from my consultant who gave me an open door invitation for a scan as soon as I became pregnant again so that I could decide on what level of testing I was happy with. We had nuchal scans, privately because I am in Wales and it is not standard, and the odds were very good so we decided against invasive testing. I was able to relax a bit after the five month scan.

Had the Harmony Test been available when I had my second child I would probably have opted for that tbh, although my baby had Patau's syndrome and it is not as reliable for that trisomy disorder.

How was your day today?

KittyandTeal · 01/02/2015 19:44

I think we will got for harmony testing, although I thought it was reliable for giving a rough rush factor for trisomies 13,18 and 21? Might need to do a bit more reading.

Been a funny day today. Saw a friend for a chat which was lovely. Saw my parents and ended up dumping a whole load of mental, emotional crap on them which I obviously needed to do. It made me realise just how slowly I'm processing everything and that although I generally feel ok that it's going to take a very long time to be 'ok' again.

As a result I've decided I need a bit more time. I'm going to book another GP appointment and see about taking another week (which is actually only 2 days) off work. I feel like I'm functioning at an everyday level atm but my head is such a mess.

I've pretty much recovered physically after a week of horrid antibiotics. I've had a headache for almost a month now (which I'll also talk to the GP about although I'm sure it's just tension) but I'm also starting to realise I think I might be suffering a bit of emotional shock or something similar, I find I shake and get wobbly whenever I talk about all the medical stuff, I seem fine talking about Rose and how she was poorly and how I feel about it all but as soon as I start talking or thinking about the medical procedures and labour etc I get shaky and short of breath. It's really very odd. Maybe I'm forcing it a bit, maybe I don't need to be thinking about all that now. I just don't know. I feel such a bloody mess right now and not the crying, sobbing sort.

Sorry that was another 'dump' of crap.

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seaoflove · 01/02/2015 20:44

You're suffered a horrific trauma, don't underestimate that. You don't need to be crying all the time to be traumatised either. This is all normal and to be expected, but it will take time to start feeling yourself again, so asking to get signed off for a bit longer is a good idea.

HumphreyCobbler · 02/02/2015 13:29

The harmony test may well have got more reliable for trisomy 13, when we looked at it for our last child it was very new and the data was still coming in as 13 is the rarer of the three.

KittyandTeal · 02/02/2015 16:25

Yeah I had a really rough evening yesterday. Absolutely beside myself, couldn't move from the sofa and could stop sobbing. Think I scares my poor DH as it went on for about an hour.

I know it's normal but it definitely shows I'm not ready to go back to work for now.

It's interesting to hear you talk about trauma, I've not thought about it like that before but it is traumatic and I have suffered trauma with the termination injection especially.

All extra stuff to try and process.

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HumphreyCobbler · 02/02/2015 16:30

I can absolutely relate to your trauma over your injection, I had similar over the insertion of the pessary to send me into labour.

So sorry you had such a bad night, remember to be very kind to yourself and don't think about going back to work for a while.

KittyandTeal · 02/02/2015 16:49

I feel like I should be ok to go back by now, like if I don't I'm just being a bit weak. I'm worried people will think I'm milking it, even though I know they won't!

I'm definitely not in any for date to work. It might be a little different if I did a job where I could walk out and have 10 mins to myself if I got upset but I can't, I'm a teacher so I can't just leave the classroom if I feel like I'm getting upset.

I just feel absolutely incapable of making even small decisions.

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seaoflove · 02/02/2015 17:16

Don't be daft. You've lost a much wanted baby in horrible circumstances. Why should you feel OK about it? Why are you weak? You have been through so much, physically and emotionally. Be kind to yourself.

KittyandTeal · 02/02/2015 19:10

Thank you. I think I need a firm talking to tbh. Everyone I've spoken to and said I'm not feeling ready for work has basically said 'of course not why would you be'. Everyone seemed to think I was being ridiculous when I said I'd be back at work this week.

Oddly enough I think I'm just starting to understand the enormity of it all.

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HumphreyCobbler · 02/02/2015 21:53

You must allow yourself this time Kitty, and believe everyone else when they assure you that they understand. They do.

Teaching is a very draining job (I am a teacher too), you are performing all day long. I wouldn't even consider going back until you actually feel ready. This could be another couple of weeks or six weeks or three months. Or whenever.

KittyandTeal · 03/02/2015 19:51

Thanks. I know in my gut I need more time.

I keep coming back to the actual termination. I don't know why. I know it was the right decision for us (I know everyone's different and I don't disagree with people who decide to carry to term) we didn't feel there was any other decision. I don't feel guilt about it. So why do my thoughts keep going back to it? I keep having kind of flashbacks to the actual procedure and the day it happened. Maybe it's just my brain trying to deal with a horrible thing that I had to do.

It somehow feels a bit different to if she had 'just' died (I say 'just' but I know it's not like that I just can't express it in another way atm) of Edwards. I desperately wanted them to tell me she'd died when we went up to kings that day. That's a terrible thing to wish your baby had died so you wouldn't have to make the choice to kill them.

How do I even start dealing with that? On top of the grief of loosing her.

I think that bit is just starting to come out. Up until a few days ago in my head she'd died and it was Edwards syndrome, which is true but now my brain seems to be opening that can of worms with the actual termination.

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HumphreyCobbler · 03/02/2015 20:58

It is so hard. It is a decision I made too, and the decision that most of the people in our situation make. I promise that you will come to feel that you made the right decision as well as knowing you made the right decision.

I feel that doing this, as hard as it was, was the last and only thing I could actually DO for my baby. There wasn't going to be a happy ending. I am certainly at peace with this decision now. You will get there.

KittyandTeal · 03/02/2015 21:07

Thank you. It's good to talk to someone whose been in the same situation.

You're right when you say I know it was the right choice but I need to feel it was the right one too.

Someone on here told me that someone had told her (going through the same thing) 'we carry this hurt and pain every day so our baby never had to feel hurt or pain' I'm kind of clinging to that atm.

I guess there's just so much mess in my head atm that I can't deal with it neatly, one thing at a time, it's all hitting me at odd times.

I'm starting to think I've not even properly started with the grief. It's so hard to tell.

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