Edwards syndrome-awaiting mc

[Loujust40]

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

LT

[SilveryMoon]

I am so sorry you are facing this.
I don't know anything about edwards Syndrome.
A friend of mine recently had tests on her unborn baby for this and was told this condition is not compatable with life

Hope someone comes along who can support you.
{{hugs}} (very un mney I know)

[Loujust40]

Thank you for your reply, it sounds like a similar situation for your friend so tell her i am here if she needs to talk-i am finding it hard to talk to people i know, face to face.

LT

[brookeslay]

I had something similar I would probably choose to terminate now if you have a 100% diagnosis I had a translocated chromosome baby and the choromsomes that were affected would incapatibilty with life. i waited and it was 22/23 weeks can`t exactly remember as I blocked it out.

It was worse at that stage with the baby moving so much. I assume you have spoken to the genetic counsellor ? they are worth their wait in gold and most other doctor and consultants give you zero support.

I was also internet crazy trying to find hope or beat the odds. It opens your world to so many problems/syndromes that it is bewildering. Also spreak to ARC http://www.arc-uk.org/.

take care talk to your partner/husband too.

[brookeslay]

here

[Loujust40]

That is the issue-the longer I wait the worse I assume it will be. Yes I have spoken to wonderful and very sympathetic doctors and they keep telling me that I don't need to make any descisions yet but I feel the pressure of time and I am just waiting every day for something to happen-we are in limbo.

I am sorry to hear you have been through this-it has been the worst few weeks of our lives.If not too personal can I ask if everything has worked out for you yet? If not good luck.

We have decided to have one last try after this but it can be just too painful when it all goes wrong.

many thanks for listening

LT x

[tvfriend]

Very sorry to hear about your baby.
I haven't been in a similar situation but a good friend has. Her baby was diagnosed with Edwards Syndrome at about 16 weeks, She decided not to have a termination and the baby was born at around 24 weeks I think. He wasn't alive. It was very quick and she had a funeral. She felt it was definately the right thing to do for her (but wasn't anti termination) but she did think about it long and hard.
Prior to this pregnancy she had a DD then several MC. Since this pregnancy she has had a healthy DS and DD so there is hope. Good luck with whatever you decide.

[HumphreyCobbler]

Hello

I am so sorry to hear this. It is a terrible thing to bear.

I had a diagnosis of Patau's syndrome on our first son at the twenty week scan. We opted to have a termination. This was the right thing for us to do but it was very hard.

I think talking to ARC about the choices that may lie ahead would be a good idea. They can offer you expert help and advice.

Once again, I am so sorry.

[brookeslay]

After my baby son passed we spoke to the genetic counsellor again who said that is was quite remarkable the pregnancy lasted so long the same is true in your case too it means that we can sustain a pregnancy. I too had lost a baby at 10 weeks about 2 yrs before the translocation was diagnosed. We didn`t know the problem then of course.

She also said that any future pregnancy would be 50/50 or 1 in 2. Though to get to the same stage that would drop to 5% woohoo I thought. IVF rates even with pdg are not they good.

So I trusted it to nature and 18months later I got pregnant I had no tests I wanted to leave it to nature at 20 weeks I had a private scan and warned them to be nice. I could not look at the screen as I was scared but everything was okay and I had a healthy baby boy. Believe it can happen it will.

[HumphreyCobbler]

Just wanted to add that it not often such a high future risk as brookeslay sadly had. My additional risk of the same thing happening to me again was negligable.

[brookeslay]

I have not as much knowledge of Edwards but normally ARC can put you in touch with an actual person who has experienced either the same or similar genetic problems so they can give you a more accurate outlook.

I did not get my diagnosis until the 20 week as the CVS could not be performed and had to wait until the amnio confirmed problems then bloods.

My thoughts are with you pm me if you ever need to rant.

[chorley555]

Firstly I am really sorry for the awful situation you find yourself in. I'm surprised that you have been told that you will definitely miscarry in the next few weeks. Some Edwards babies will naturally miscarry but some will be born alive and may live for a few days, weeks or even months. A few although this is very rare can live for a few years.
You could look at contact a family on ((www.cafamily.org.uk))
and look for information under medical conditions Very factual and not alarmist. You need all the facts to be able to make a decision about how you want to proceed.
Thinking of you at this difficult time

[del1]

Im so sorry to hear of your awfull news
During my 20 week scan, I was told my baby had a soft marker on his brain.
The staff at the hospital were unhelpfull and very abrupt to us.
They baisically told us that this could be a sign of Edwards syndrome, gave us a leaflet, and then said I would probably miscarry or it would die at birth.
We were very fortunate that our baby did not have Edwards.
But we still worried and it put a huge strain on my pregnancy.I searched the internet for stories, and research.
I just wanted to reply, as I really feel for you.If I could hug you I would x

[HumphreyCobbler]

del1 that is truly dreadful care.

I too wanted to say that not all babies with Edwards syndrome do miscarry as I know of a couple whose baby lived for a few days. It is important that you get to talk to someone who will be able to talk you through all the options.

[Ilovekittyelise]

i'm sorry to hear this. also just wanted to re-assure you that edwards is a random trisomy and odds of recurrence are very low indeed; someone posted on this thread about a chromosomal translocation and 50:50 of recurrence...this isnt the case with edwards - just wanted to add that so you didnt have another thing to worry about.

[Loujust40]

thank you all so much-these comments are really helping ( and virtual hugs still count!)and i think i will definately contact Arc to talk to them. I am so glad to hear that having a healthy baby is still possible next time, and so glad that brookeslay has a healthy child after such a dreadful experience herself.
I now need to look up all the abbreviations as I am not sure what they all mean! What i have realised joining this site is that we sometimes find it easier to talk to strangers that people that know us-which is kind of strange but far easier to do. thank you all so much

Lou :-)

[swampster]

I'd like to give you a hug too.

MN's Antenatal tests/choices can be very supportive/informative.

[Sparklies]

Oh my goodness, I am so, so sorry you are going through this. It is one of the worst possible and traumatic situations to be in. I honestly do not know what I would do, I don't think anyone does until they have lived it.

I know a lady whose son had it (they terminated at 15 weeks) and she went on to have a healthy daughter next pregnancy. The odds are higher, yes, but more like 1 in 100 than 1 in 2 unless there is some other deeper issue going on.

ARC will hopefully be able to help you work through your options and help you make a decision you can be at peace with - which is the most important thing.

Very much thinking of you.

[FourFortyFour]

Babies can survive ES. They don't always die. Do you know if your baby is a boy or a girl?

[Loujust40]

No we havent asked if it is a boy or girl yet-that makes it a bit more real. We probably will ask at a later date. Interesting to hear someone say that some babies survive-how do you know this and what quality of life does the child have? I guess that tiny niggling doubt is what is stopping me having a termination now-how much do you trust what a complete stranger is saying to you? You hear of doctors getting the end result wrong and that is what scares me. All helpful things-thank you for taking the time to write.

[FourFortyFour]

When we were told our baby might have this we decided to find out the sex so we had something nice to think about. It helped as ES was more common in the sex we didn't have but we were having baby regardless.

I know babies survive as I have read an article on a child of 9 with ES and tbh they seemed to have a really nice life.

I don't want to try and influence you as I won't be the one living with what ever you decision you make but I couldn't let a post saying babies with ES are incompatible with life go by when it isn't always the case.

[2and1ontheway]

Hi Lou
I hope you don't mind me replying - I am afraid I googled this but am sure you are wise not to as googling medical matters can just bring on information overload and not all the information is reliable obviously! However an NHS site seems a reliable place to look for factual information which should be accurate, so I just wanted to share with you that an NHS site (I think directed at the medical profession but fairly easily readable) states that 5-8% of babies born alive with this condition survive a year. The average life expectancy for a baby born alive with this condition is only 4 days though and the site states that mental disability in surviving infants is severe.
The site points out that parents should be given all the facts so they can make an informed decision and that has to be true, I am surprised your doctors have not given you a bit more information. The same site states that the chance of the condition re-occurring in subsequent pregnancies is only 1%.

www.library.nhs.uk/geneticconditions/viewresource.aspx?resID=93906

The contact a family site is referenced on the NHS one and gives the additional information that there are 3 forms of Edwards Syndrome:

"Children with all their cells affected do not normally survive beyond infancy. Those affected by the mosaic and partial forms may survive to adulthood."

www.cafamily.org.uk/index.php?section=861

If you are unsure what to do I think you may need to find out from your which form of Edwards your baby has, hopefully this information will have been available from the tests you have already had but has not been passed on to you...

I am so sorry you are going through this and hope this information is helpful not problematic.

[SKYTVADDICT]

So sorry to hear about your baby.

I went to the funeral a few weeks ago of a little baby girl who lived 46 days. She was beautiful. Her mummy decided not to terminate but to wait and see.

She was a friend of a friend so I don't know her really well but there is a web site called soft.org.uk, hope that helps x

[witches]

I was not really aware of Edwards Syndrome in fact I just recieved my letter to say i was at low risk and was meaning to look it up as wasnt even aware i had been tested for it. I am so sorry to hear your news it must be such a difficult decision. As i said i do not know much about it, but have heard many instances where people were told something was wrong and baby wouldn't survive - and they did, but obviously this is a tiny minority. I think even people who are pro life must see the horror in this decision. Hope this came out how i hoped i will be thinking of you x

[TheNewStig]

Lou, sorry to hear your going through this. Am and at what drs are telling you. How do they know you "will" m/c?

Fwiw, 4yrs ago a friend lost her DC2, a son, to Edwards at 38wks, stillborn, she knew from 12/13 weeks but chose not to terminate even with the knowledge her child was unlikely to survive more that a few days/weeks or may die inutero. Her DC3 was born late last year.

[girliefriend]

Sounds like an awful situation, I really feel for you and send you my best wishes.

I think in these situations you have to go with what 'feels' right for you, don't be pressured into doing something that you feel uncomfortable with and do give yourself time to think things through.

Some counselling might help.

xxx