Edwards syndrome - termination

[KO80]

Hi, i'm not sure if I'm writing this in the correct section. I found out two weeks ago after a couple of extra scans they suspected that my baby had edwards syndrome, which was confirmed a few days later when I received the results from the CVS.. Knowing that even if my baby did survive to full term or even being born that it wouldn't survive long after (plus i'd seen my niece go through losing her baby girl to SMA at 7 months) I knew I could not carry on with the pregnancy. My husband was in full agreement with me so last Thursday I had a medical termination. The doctor and midwives were amazing and really help me on the day. I would have been 15 werks on the day of termination.
Everything happened so quickly guess i'm still trying to process everything and get my head atound the fact i'm no longer pregnant. I never enjoyed being pregnant i felt
really nauseous and rough for weeks and I couldn't shake a feeling somthing was wrong. My husband has been amazing but I think its different for men, if that makes
sense.

To top it all off two days after being told they thought my baby had edwards syndrome I found out my sil is pregnant with her second child.

sorry its a bit long I just wanted to get it all out. I'd love to hear from anyone else whos baby had edwards or if you have had a medical termination for whatever reasona dn just how you deal with it. X

I've not been through what you've been through, but I wanted to tell you that I'm very sorry. It must have been a terrible shock.

Take care

I'm sorry for your loss .

I knew a lady who had a termination with her dd who had Edwards syndrome. She decided on a flower name for her child, and planted lots of flowers of her dd's name in her garden. She would sit out there and think about her feelings and process her grief somewhere private she had created.

I hope you can find a way to cope, it is an awful thing you have been through. My dsis lost her dd at 5 months when she was 17, and I know she still feels upset as our parents didn't really give her space to think and expected her to get over it, and I think if she'd had more space and time she would have been able to grieve in her own way.

I have been through almost exactly the same.

Our DDs Edwards was picked up at 21 weeks and so we had the termination at 22weeks. That was back in January.

Today is actually my due date!

It is and has been horrific. I have got through it with wonderful people around me and by seeing a specialist counsellor who deals with still birth and neonatal death.

Have you had contact with sands or arc? Both have provided me with much comfort and support.

Funny, I was the same as you, really nauseous and rough through the whole pregnancy, nothing like with my dd1. I also knew deep down something was wrong, I just couldn't imagine a baby at the end of my pregnancy.

I won't try to give you too much advice, often it seems very patronising. I will say contact arc and/or sands if you haven't already, allow yourself to feel whatever you feel at that time. I desperately tried to stop myself feeling guilt and anger, it didn't feel right but in the end I felt worse. You will have people who tell you shit like 'it was meant to be' or 'you just weren't meant to have thins baby' I know they're trying to be helpful but it's ok to day 'I don't find that helpful right now'

Have the hospital offered you a service? We had one and it helped hugely, we also have a plaque in our locals sands garden which helps as it's somewhere to go.

Your hospital should also offer you a 6 week appointment with a fetal medicine consultant to go through what happened and risks for the next pregnancy.

I'm so, so sorry you have been through this. I understand your pain and detestation. Pleas feel free to pm me if you want a chat, otherwise I'll keep checking back on this thread.

Have you named your baby btw?

Hello. I'm so sorry that you have been through this. I have had a termination at 24weeksmyself 2 years ago. I don't call it this but each to their own, my medical reasons were different. However, a close friend at the same time delivered her baby at terms to find out she had Edwards and passed away 5 days later, if she could relive her time she would have chosen the same route as us.
Everything you feel is normal no one can say you should feel a particular way. Please contact Arc they were an endless help in the early days and the forum is an plenitude of support an advice the ladies on there are amazing, I still visit now.
Milestones are a hard one to get through, particular dates such at leaving for mat leave an especially due dates but you just deal with them the best way you can.
One of the hardest things is other pregnant people, one I returned to work I had to deal with someone with a very similar due date and 4 other pregnant people - at times it was the hardest thing I could do. Eventually I came out on the other side. Be kind to yourself xx

Zen would you mind telling me how you refer to it? I dont particularly like the name or the phrase 'termination for medical reasons' although I know it's accurate. I prefer it to 'abortion' (which I know is also medically correct but sounds like a social choice rather than a medical one)

I'm looking for a phrase or name that is a little softer or nicer maybe. I'm happy to tell people that we chose not to continue rather than telling people she died.

Other pregnancies atm are what I find the hardest. Oddly enough I seem to be ok when there are babies.

But yes, I think at some point you get to the stage where every day doesn't feel like a struggle. I'm just about there although lots of days are still very hard.

Personally to my family, our beautiful baby boy existed, was named and was the exact image of his sister and so for us we refer to losing him. For me personally the choice we had was limited an it was to end the suffering now or at a later stage - as you know the hardest decision ever to make. So when people ask me how many children we have I say 2 because he existed with me for 6 months an was and is very much part of our lives. If I ignored him I would feel guilty. It's however you feel comfortable.
It's been 2 long years but we are currently blessed with being 30 weeks pregnant with a little girl, this has been very hard as I am due to exact dates as I was with our son. Somehow we find the strength to get to the end goal.
If you have any questions or want to rant just message me, there probably isn't a thought or feeling I haven't had over the time. For me talking to those who have been in similar situations was a lifeline xxx

Ah, thinking about it I do use that phrase much more to people. I generally say we lost Dd2 at 22 weeks rather than 'I had a termination'. I guess I use termination when I'm talking about the actual medical procedure.

Our dd2 was also named, we had a service and she has a plaque in our sands garden. Makes it much easier to deal with. Dd1 is only 2.8yo and didn't know a baby was on the way so she knows only a little of her sister, she's seen photos and I've tried explaining in a toddler friendly way but it's tricky.

Saying that she will always know she had a little sister. Last time we were at the sands garden there was a family with the older children there, it was lovely.

KO80 I'm sorry to hear you've had to experience this. We lost a little girl at 18 weeks 3 years ago due to a very rare chromosomal disorder. It was hell on earth and I felt extremely low for a long time.

I would say that time is a healer, you'll never forget your baby but with time the pain does pass. At first I could never imagine a time when I'd be able to think about her or refer to her without crying, but now what happened is a part of my life and I can accept it more.

I'd also second (third?) the recommendation to go to ARC (antenatal results and choices) for help. The forum was a lifeline and I'm still friends with women I met there 3 years ago. Being able to talk to people who 'get it' makes such a huge difference.

Finally, I'd say accept you are bereaved and allow yourself to grieve. Just because you had to make a decision doesn't mean you wanted to lose your baby and I found I tried to fight feelings of loss at first which was counterproductive. Someone once said to me you've actually got three losses to deal with: the baby you dreamt you'd have, the baby you carried inside you and loved and your self-image as a 'fortunate' person. I think this helped me untangle the emotions I was feeling at the time.

Sending you lots of love, take care of yourself. Piz

Ps Kitty, sorry to hear it was your due date the other day, the 'first' milestones are the hardest to deal with and can be so raw xxx

Yay to grieving the 'fortunate' me. It's hard to hear you and your baby have suffered because of pure chance (although better than someone being at fault I imagine)

I am just getting past the 'why me' stage. I'm not sure if I will move on from the 'I've been that '1' therefore it can and possib,y will happen again'

Im very sorry you had to go through this, it must be hard for you and your family. Everyone deals with these things differently. I took a more pragmatic (not sure if that's the right word?) approach and although I had lots of good cries around the time of the loss I didn't have any desire to name the baby or do anything to commemorate it. I thought of it more as a loss of an opportunity to have a baby rather than the loss of a baby. if you see what I mean.

My DH and family were all lovely as were my work colleagues. Everyone acknowledged it and sympathised with me but not overly so. A lot of the women at work confided in me with their own similar stories which I found helpful. I felt sad about it but it was compartmentalised - in a healthy way (for me). I don't recall the due date and I don't think of it as a lost child. It sounds very matter of fact but it worked for me and I wouldn't have handled it differently if I had to go through it again. I had a 4 days off work. I was about 15 weeks too.

I completely understand why other people think it's important to mourn the loss of the baby but I wanted to say that there is no right or wrong way and you just have to try and figure out what's best for you.

to everyone who have gone through this. It's very sad.

Absolutely wandering.

I think it is assumed now that women want to name a baby, mourn the loss and feel the baby is part of the family. I know it has helped me.

However, if that is not helpful or a healthy way for you to deal with it that is also ok.

Either way women shouldn't feel pressured into trying to feel or behave in a way they are told is 'right'. The only right way to deal with this is whatever way works for you.

Thank you for showing the other side of things wanderer x

Thank you all for your kind words and sharing your experiances with me.

WanderingAboutRandomly I think I've been dealing with the whole thing more like you, we chose not to know the sex of the baby or to name the baby, or do anything to commemorate. I seem to be mouring the lost of what should have been.

I feel sad all the time, I can function most of the time especially if i have things to do or people to see (i've been off work) but some days the sadness seems all consuming like today. I think I will give Arc a call or join the forum. I'm returning to work tomorrow after 3 weeks off, my work knows everything and have been supportive, I'm dreading going back as the thought of them being so nice makes me want to cry. Also one of the girls I work with is preganant she is 5 weeks ahead of me so that will be hard.

I also don't like saying I had a medical termination but couldn't think of another way of saying it, so thank you not carrying on with the pregnancy is a nicer way of putting it.

Xx