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Pregnancy

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

Original poster

Edwards syndrome.

35 replies

LynzyG · 29/11/2017 21:31

Hi everyone.
My baby boy has been confirmed as having Edwards syndrome. It was first suspected after a scan at 10 weeks, our boy had full body cystic hygroma, reversed blood flow and some abdominal organs still outside his little body. Following a cvs, Edwards was confirmed. With the extent of all his little problems we have made the heartbreaking decision to terminate. My surgery is tomorrow morning. Don’t really know why I’m writing this on here really! I’m not usually the ‘talk about my feelings’ kind of person. But we are obviously devastated. Just wondering if anybody had been through anything similar?

OP posts:
OoohSmooch · 29/11/2017 21:36

I am so sorry for your news, I haven't been through this but we did have the CVS last year as our risk for Edwards/Patau's etc was high.

From when I was on the boards last year there are a few MNers who have been through this and I hope they see this and can help you through this awful awful time.

Look after yourself and each other xx

Dorabean · 29/11/2017 21:36

I haven't had to terminate a pregnancy but I have lost a baby at 24 weeks. I am so so sorry that you have had to make this decision, there is as much support you need here. Thanks. No one should have to go through anything like this.

BeanSprout79 · 29/11/2017 21:36

I'm so sorry to hear this and feel for u. I haven't been in your situation but I did have a mmc and know the devastation of losing such a precious thing. I really hope everything goes well for you tomorrow. Stay strong. xx

QueenAravisOfArchenland · 29/11/2017 21:38

OP do consider also posting on the Antenatal Tests forum. There are lots of people around who have had to make these terribly hard decisions. A TFMR is never easy.

Good luck to you and I hope the procedure goes OK. Flowers

PerfectlyDone · 29/11/2017 21:39

I am so sorry you are having to go through this - how devastating Thanks

You are making a brave decision and are likely saving your son pain and distress in the face of impossible odds. That takes courage and strength and is what parents do.

My thoughts will be with you tomorrow x.

TheVanguardSix · 29/11/2017 21:40

I can't recommend ARC website and forum enough. You'll find a universe of love, understanding, and support there.

www.arc-uk.org
SadFlowers

PerfectlyDone · 29/11/2017 21:40

Oh, x-post, Six Smile

TheVanguardSix · 29/11/2017 21:41

Try again...
www.arc-uk.org/

Chocolatear · 29/11/2017 21:43

I went through the same as you 12 years ago. It was heart breaking but I know that termination was the right choice.
The staff at the hospital were fantastic.
How many weeks are you now? I was 16 weeks.

I hope everything goes as smoothly as possible for you xx

AcademicOwl · 29/11/2017 21:44

I've not been through this, but just wanted to send a supportive thought. What you're going through is awful and waiting for tomorrow must seem like an eternity. FlowersFlowersFlowers

Areyouready · 29/11/2017 21:45

I'm so sorry to hear this. My sister lost her little boy at the same stage to the same syndrome.
I can't begin to say how she managed, but we often talked about her son, by name, and she had a keepsake box that gave a lot of comfort and we used to go through the momentoes and cards together.
Lots of tears, lots of hugs, and just time, there is no cure for your heartache Flowers

Original poster
LynzyG · 29/11/2017 21:51

Thanks for all the supportive messages. Chocolatear, I am 12+2 weeks. I know it’s just the terminology but I hate the thought that I’m ‘terminating’ or ‘aborting’ the pregnancy, as I don’t believe that’s what I’m doing! In my heart I know my baby boy is going to die, either before he’s born or not long after and I don’t want him to suffer when his fate is already decided. I strongly believe it’s euthanasia, and I know if me or my husband where in a position with such little quality of life, we would choose it for ourselves too. But I just hate the thought that I am having an abortion.

OP posts:
PerfectlyDone · 29/11/2017 22:13

Yes, the language around making the choice to end a doomed pregnancy is awful - I totally agree with you.

Personally, I prefer 'terminating' to 'aborting'.
I think you are choosing peace and comfort for your son over what fate/fluke of genetics had dealt him.

I have never had to make your choice but carry a genetic defect that gave me a 1:4 chance of a couple of trisomies not compatible with life, so had to think long and hard about whether to risk a pregnancy.

I know I am repeating myself, but IMO you are putting your unborn child's best interests over your own heartbreak. And that is the bravest thing any parent can be asked to do.

Glitterandunicorns · 29/11/2017 22:19

I'm so sorry, OP Thanks
I'm be never been in your position, but echo the previous posters who have said that you are making a courageous decision and I hope you find peace.

Iamchanging · 29/11/2017 22:25

I will be thinking of you tomorrow. 7 weeks ago now we had to terminate our baby girl and she was born at 26 weeks. I’m not going to lie, it is horrendous but like us you know that you are choosing the kindest option for your baby as hard as it is. The first couple of weeks for me were utterly unbearable but life does go on and time numbs if not heals. Just take each day as it comes, don’t set yourself any expectations and talk about your precious baby boy as much as you feel comfortable. Have you got a name for him? Also I read somewhere that a baby actually changes your DNA in some way so he will always be part of you x

Manctart · 29/11/2017 22:33

I don't have any advice to offer but would like you to know I will be thinking of you tomorrow Flowers

Original poster
LynzyG · 29/11/2017 22:34

Thank you guys, you’ve really helped me tonight. It’s nice to know that other people feel the same as us and we’re not just being horrible parents. Ianchanging, we had Xander George picked our for a boy. I haven’t spoken to my husband about naming him though. Part of me feels strange that I am naming my son who I will never meet, but part of me thinks it may help with closure l. I was thinking of naming him and then getting a star named after him, so I Know he’s lways there looking over us x

OP posts:
Original poster
LynzyG · 29/11/2017 22:35

Also, that is really lovely about baby’s changing their mothers dna! I didn’t know that and it’s such a comfort x

OP posts:
Iamchanging · 29/11/2017 22:40

Personally I would 100% name him, he lived just like my little girl. It doesn’t matter how short their lives were, they are still our children x

fabulous01 · 29/11/2017 22:45

I highly recommend ARC

Also the hospital should have given you materials to read which covers the things you never really want to have to read.

You are likely to be in a different ward to maternity but prepare for all eventualities and take lots of spare clothes

And take a magazine or get one for bloke as it y take several hours particularly if you have to go through labour

And lots of hugs. You will need all the strength you will ever need for what is ahead

Take care xx

EastDulwichWife · 29/11/2017 23:19

What an incredibly difficult time for you OP. You’ve made such a brave decision. I will be thinking of you tomorrow. Look after yourself. X

Rebeccaslicker · 29/11/2017 23:34

Oh OP. All the Flowers in the world for you. Thinking of you and your DP.

PerfectlyDone · 30/11/2017 17:50

Thinking of you and sending you strength Thanks