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Pregnancy

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

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Original poster

Edwards syndrome-awaiting mc

39 replies

Loujust40 · 28/02/2011 19:32

Hello mumsnet people

I was wondering if anyone out there had ever been in the strange situation that I find myself in now? I had a missed mc last year but managed to get pregnant again within 6 months. Sadly at our scan a few weeks ago a huge swelling was found all around the baby and after tests this turned out to be Edwards Syndrome. We were told that I would miscarry within a few weeks which was obviously devastating, but this has not happened yet. At the last scan a few days ago we could see that they baby still had a heartbeat and as I am now 14 weeks I am faced with having to make a choice that I really dont want to make. I am horrified to find out that in my situation I can choose to terminate at any stage of this pregnancy right up until the end-why have I never heard of this?-I didnt ever occur to me that this could happen in this way. I wanted to wait for nature to take control but I don't know if I can take that chance as I have been told my baby will not survive if born alive. I dont even know why I am writing this long message but if anyone wants to comment I would be grateful

thanks

OP posts:

lenak · 07/03/2011 12:26

Sorry you are having to go through this.

There are some stories about people who have had children with Edwards Syndrome on this site.

The oldest person in the UK to survive with Edwards is 18 although there people in America in their 20's and the oldest known survivor was 36 when she died.

I think all those born with Edwards do have severe disabilities though.

for whatever you decide to do.

sarahmia · 07/03/2011 18:39

lou -
I went through something similar twice this year.
the first baby, i found out at 15 weeks that it had triploidy. (very similar to edwards) and its incompatible with life. I decided to let it happen naturally as my dr told me i would definitely miscarry and most probably not make it to my next scan (2 weeks later) well i did.. i made it all the way to 24 weeks and couldn't take it anymore, so i decided to terminate then.. which was so much more traumatic as i had to give birth to the baby... but as the baby was so small (a sign of triploidy) i never actually felt it move. (which was actually a good thing.)

The second time, I found out at 12 weeks and decided to go for a d&c as i couldn't bear to go through it again... signed all the paperwork and booked to come in the next day for it and went home. I miss carried that night. in comparison, it was traumatic but nowhere near as bad as the first one. but because it was so fast i had no time to come to terms with it and found it so hard afterwards, whereas the first time, i had taken so long to get to the point where i had decided to terminate that i felt a slight relief when it was over.

so many people told me what i should do and what they would do... it doesnt matter, YOU have to do what is right for YOU and if it takes you 3 weeks to come to that decision or 3 days, it doesnt matter.
If you want to PM me... im happy to talk. :)

xxx

Applemuncher · 07/03/2011 20:43

Hi Lou

I don't have any first hand experience so I can't give specifics but a friend of my husbands have a daughter who has Edwards Syndrome. It's incredibly sad news for you to have to receive and you have the most awful decision to make.

I just hope you can get some support - my husbands friend's daughter lived to be 9 years old (which I understand is quite an achievement but not impossible), she required a lot of special care and was very ill towards the end, either way it's just so incredibly sad.

My thoughts are with you and I hope the hospital can give you all the information you need to make the difficult decision and hopefully counselling to help you deal with your decision.

Original poster

Loujust40 · 10/03/2011 11:50

Thank you so much to all the people who are still posting comments for me-I am just gathering information so I feel I have made the best choice I possibly can (as I have to live with it forever.) Without medical knowledge it is really hard to know if the baby would suffer more if I terminated now, or if it was to pass away naturally even if this was much later in the pregnancy.My gut feeling is that the baby would suffer more once outside of my body- I will certainly have a look at all the websites that you have all kindly suggested.
Thank you all again for taking the time to talk to me-it is helpful.

Lou

OP posts:

FourFortyFour · 10/03/2011 11:53

I wish you all the best.

SarahScot · 10/03/2011 12:38

Wishing you all the best too, what a horrendous situation to find yourself in.

VeryHungryKatypillar · 10/03/2011 14:17

Just wanted to say that I hugely sympathise with your position. It is such a tough decision to make, but you have been pointed to some really good websites which will help you work out what you want to do.

Our first DC was confirmed as having Edwards Syndrome after a CVS test. We decided that we did not want to progress the pregnancy any further, the outcomes for our baby were extremely poor. We had a medical termination (not surgical) at 14 weeks which whilst traumatic, was not as bad as I had thought. It did take hours to happen, but I felt I owed our baby that time and focus, rather than being asleep whilst an operation took place (this was obviously my way of looking in a positive way about what is a traumatic experience - not in anyway saying that surgical terminations are not the right thing to do).

We went on to have a healthy, crazy, delightful, energetic little girl and we are now pregnant again with DC3. We will never forget our first baby but the pain does dull over time.

I wish you all the very best. Pls do feel free to msg me if you want to talk offline.

Original poster

Loujust40 · 24/07/2011 20:55

I thought I would post that we are pregnant again but very early days so wont know if early scans are ok until week 9 when our lovely Dr will see us. He is saving us the trauma of registering with our local midwife, getting a MAT card sent (which i might have to return), getting packs of vouchers that we may never use etc. We will register when we know if it will continue. Keeps your fingers crossed for us-very scared!!

OP posts:

Crosshair · 24/07/2011 21:15

Hope everything goes well for you.

Squiglettsmummy2bx · 24/07/2011 21:42

Wishing you a happy healthy pregnancy x

Ilovekittyelise · 24/07/2011 22:08

im really pleased to see you are pregnant again. unless you had a very inherited form of edwards im pretty sure your chances of it happening again are negligible. i know you will worry, but try and believe that this baby is healthy and enjoy each day of your pregnancy as if its you last...in the same situation i realised worrying and obsessing about it wouldnt change what was growing inside me and somehow i just decided this baby was fine and that was what i was going to believe.

im not sure what happened in the end with your previous pregnancy, but i had a termination last august for T21 and im now 33 weeks along with what looks like a healthy boy (I didnt have the combined test this time, the nuchal was normal and i couldnt deal with the stress of tests and left it to chance and all looks ok). i still cry whenever i see anyone with down's and think about the little girl we never had, but mostly we are happy and excited about our son.

i really hope the next weeks, months and years will bring you the joy and happiness you deserve after your painful experience. your little angel will always be with you but this new baby will fill you with joy and love and you will get to a point where you love them both equally and somehow it all seems ok.

Ilovekittyelise · 24/07/2011 22:10

sorry i meant very rare inherited form not a very inherited form

cherrybug · 25/07/2011 09:33

Loujust - sorry to hear what you have been through previously and a quiet congratulations on being pregnant again.

Just wanted to say there is a thread here on Antenatal Tests and Choices area of MN which is for people who have had to end a pregnancy and who are now facing the scary journey of pregnancy after a loss. I'm not sure of your particular situation regarding the outcome of your last pregnancy so I'm sorry if it isnt appropriate. But there are a huge amount of happy endings on this thread for people who have gone on to have healthy children after a previous diagnosis of Edwards.

nikibwilliams · 13/02/2015 07:47

Hay, so sorry for your news, I know what your going through. I had my 12 week scan in Sept 14 (I'd worked out I was 13 weeks) but baby was small nt reading of 11.2 I knew it wasn't right. We had the amino fluid testing which confirmed our worst nightmare. He had Edwards syndrome :-/ words can't describe the feeling that creeps over you. I knew what the outcome would be but I had to make a desion that was best not only for out unborn boy but for myself, my partner and my daughter. We decided it was kinder to let him go and had a medical termination just after 15 weeks. The months following were really hard, but you get by. 4 months later I have caught with our rainbow baby and awaiting scan dates. The fear is still there but hopeful all will be ok. Loosing a child I'd never easy and I'll never forget our little bean. Hope you will be ok, sending you all my hugs Xx

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