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Original poster

Possible Edwards baby - test or not to test?

74 replies

SilverLining · 17/02/2005 13:11

Have just found out that I have a slightly raised risk of having a baby with Edwards syndrome. Apart from being totally shocked and devestated not really sure what to do. We are offered a CVS next week or wait till 16 weeks for the aminio - not sure what to do. I work in a neonatal unit and my boss (Professor no less!) thinks its such a small risk that I should do nothing but not sure if I can last 6 months not knowing. Never thought I was a control freak but now realise that I am! Any one with any experience of this? I'm 31 and 13 weeks on Saturday - 2nd pregnancy. My nucal fold was perfect apparently and the baby was moving and doing everything it should - could see the brain hemispheres and everything! One blood test was perfect but the other one was very low and thats whats done it apparently! Thanks in advance - SL x

OP posts:
aloha · 17/02/2005 17:27

I was told - at Kings - that CVS and amnio have the same risk factor - it's just that CVS seems riskier because there are more natural m/c (ie not related to the tests) earlier in pregnancy than later (ie CVS happens around 12 weeks when there is still a raised background risk of m/c unlike the amnio).
In your position, I'd probably go for CVS. Good luck, and I'm sorry you are having to deal with this worry.

Marina · 17/02/2005 17:35

(off topic) Tallbird, I am so glad to hear your news...although obviously the scan to come is worrying. Really hope all works out for you better this time.

Mirage · 17/02/2005 18:36

Hugs to you Silverlining.I personally know 3 babies/children whose parents were told that there was a high likelihood of Edwards at their 20wk scans.Soft markers to indicate this had been seen & in one case,the Dr told the mother that she should have a termination as it was almost certain that the babies had Edwards.( no bloods were done as it was a twin pregnancy & the results are unreliable}.The mother refused went on to have perfectly healthy twin girls.In the other case,the blood tests indicated a problem & the mother refused any further testing,but went on to have a lot of scans.Again soft markers were seen,but the baby was absolutely fine.

It sounds as though you are in the best place to get good advice at work.Were you given the odds or just told it was a small risk?

I hope things work out for you.

Marina · 17/02/2005 18:39

How I agree that of all the options for testing those soft markers cause more misplaced heartache than anything else...they can be a nightmare.

Original poster
SilverLining · 17/02/2005 18:43

Thanks again everybody (especially Tallbird - thanks for your story). Have been talking about it non-stop and for the exact reasons mentioned here we have decided to go for a CVS as I just feel I have to know and since making the decision I have felt a weight lift slightly off my shoulders. Still quite wobbly but the plan is taking shape and I feel a bit more in control. It has to be next week as I will be 13+6 on Friday (25th) so hopefully things will move quickly. I've been advised who to get to do it and nothing wrong with calling in favours - don't get many perks in my job!

Big thanks to everyone - especially for virtual hugs! Its the first time I've really put out a plea for help on Mumsnet and the results are amazing! Will keep you all posted on any results which I get. SL xx

Blu - don't work at Harris but know it well!!

OP posts:
motherpeculiar · 17/02/2005 19:23

Thinking of you Silver Lining and hope you can come to a good decision soon. My family has a history of a completely different but fatal outside the womb syndrome and I know from two of my siblings how difficult decisions like this can be. I wish you all the luck in the world next week.

Off topic again - congratulations to you tallbird - I remember you from the due in April thread - so pleased things have worked out for you so far and best of luck with the screening.

Hugs to you both.

inglis · 18/02/2005 16:58

I recently was given a risk of 1:15 for a Edwards syndrome baby based on my bloods (exactly like yours) and an increased nuchal fold of 3.6mm. Previously I terminated a pregnancy due to the discovery of major structural abnormalities at the 12 week scan (nuchal fold in that case was 6.5)In the case of the baby I terminated the doctors convinced me that it was an Edwards baby - a syndrome, as you know, incompatiable with life.

Be very reassured. In your case the nuchal was perfect and the baby looked fine. Edward's babies tend to have distinguishing features - cleft lip & shortened limbs being two I remember - and your babe didn't. I would be very, very surprised if there is anything wrong with your baby. Please take heart. Don't get too hung up on these figures that they give you - try and look at things differently. In this current pregnancy my risk was 1 in 15 (which seems a high risk) But that still meant that there was a 93% chance that the baby would be fine. In other words the odds were always in my favour. (Oh, and by the way, the baby does appear fine. CVS normal. Recent scans very encouraging. I am now 24 weeks.)

I'm sure all will be OK. Really, really, really truly.

Blu · 18/02/2005 17:06

We're here, SilverLining.
I am sure the waiting is excruciating - but as inglis says, the signs are good. The wait for results after the test, is IME, even more tense - hold tight, there are plenty of people on Mn who know exactly what you are going through.

Original poster
SilverLining · 18/02/2005 17:14

Thanks Blu and Inglis - feeling a lot better today to be honest. I've got my CVS on Tuesday at lunchtime so hopefully this time next week I should be a lot more positive position.

Its my DDs 3rd birthday today so to be honest thats been quite a good distraction! All in all a much better day than of late and I'm keeping busy, mind occupied etc I just feel happier that something is happening and the waiting will soon be over.

Thanks so much - SL xx

OP posts:
bundle · 22/02/2005 11:55

oh silverlining, i'm so sorry i've only just noticed this, but you have had some excellent advice from people on here. i had a 1/30 risk of Edwards (I believe it is the commonest chromosomal abnormality (1/8,000 births) after Downs, which is 1/800 or so) which was higher than it should have been for my age. my risk of DS and spina bifida was low from bloods/nuchal. i had an amnio because i too would have terminated an Edwards pregnancy. a friend of mine whose dd visits a paediatric clinic says there is an Edwards child who's about 4 or 5 yrs old, but i believe that is v uncommon. when she was doing my scan/amnio my consultant kept talking about the baby's fingers (crossed digits are another marker for Edwards) and toes in a v positive manner, which was lovely. i don't regret having the amnio and the result was negative and we now have a nearly-2-yr-old dd2. it's about now you're having the cvs, isn't it? i'm so sorry i wasn't around for you last week, i'm keeping fingers crossed for you, xxxxxx

RTKangaMummy · 22/02/2005 11:57

good luck with CVS today SL

sending cyberhugs {{{{{{{{{}}}}}}}}

Mirage · 22/02/2005 12:58

Hope it all goes well for you today Silverlining.

Mirage · 22/02/2005 12:58

Hope it all goes well for you today Silverlining.

HunkerMunker · 22/02/2005 13:03

Thinking of you today, Silverlining. Hugs xxx

leglebegle · 22/02/2005 13:23

I have a very good friend who has a daughter with Edwards syndrome. If you have any queries let me know and I can either answer them if I know them or pass them on to her. Her little girl has just started school, an ordinary one and is incredibly popular. She's a lovely little girl she really is, but they did have a lot of hard work in the beginning and she has just had a major operation. Its not easy but I don't think it was quite the doom and gloom they thought when diagnosed.

bundle · 22/02/2005 13:26

leglebegle, that's really interesting about your friend's daughter. the only family i know who were affected had a little boy who died just three days after he was born. what kind of problems does your friend's daughter have?

leglebegle · 22/02/2005 13:43

she has a very serious curvature of the spine, and has worn a back brace for most of the time I can remember, she has just had an operation, a big one to insert a support directly in her spine as I don't think the brace was working. she has developed at a slower rate than other children, but other than that I can't see any problems although my friend might say differently. she is a lovely little girl, really friendly and loving. the sort that stays in your heart forever if you know what i mean? we have a really soft spot for her. she must be okay because I know she has just started at school, an ordinary one and my friend says is getting on really well and is loved by all the children.

Twiglett · 22/02/2005 13:47

good luck for today silverlining

Marina · 22/02/2005 13:50

leglebegle, what a marvellous story. I am guessing her mum and dad knew that she was possibly Edwards before birth and opted to continue the pregnancy. What courage.
SilverLining, wishing you all the very best for tomorrow.

hotmama · 22/02/2005 13:54

Big hugs Silverlining. You will probably be reading this after you have had your CVS. I had one last March at 12 weeks pregnant and gave birth to a dd last October.

I am an older mum ( 38 next month) and wanted to know if there were any problems etc.

Please put your feet up for the next 2 days and be waited upon - really is important that you are looked after.

I was surprised by how upsetting I found the experience even though I knew it was the right decision for me, so please have a big cyber hug.

bundle · 22/02/2005 13:55

leglebegle, that's a really heartwarming story. the whole catalogue of problems that edwards children can have is v long and I suppose that some of them could be "hidden" from view. my friends weren't aware that their baby had edwards syndrome and it came as a great shock to them especially as his life was ended so quickly.

leglebegle · 22/02/2005 15:19

that must have been so awful I can only imagine. My friends also didn't know actually, it was only as the baby got older they began to see things weren't 'right'. They found that the medics weren't really on the ball about it as it was a largely unknown syndrome. They educated themselves about it and joined an edwards syndrome group. I remember they really did research a lot about it. My friend is a nurse though and very dedicated. She is one of the best mothers I know actually, I always admire her strength in dealing with it. She did tell me once that her little girl will probably never be able to live alone as Edwards means they have problems doing bills and ordinary things, and she could be massively taken advantage of if not protected.

Original poster
SilverLining · 22/02/2005 19:04

thanks everyone - all went OK today - doctor thought it was unlikely to be Edwards as the baby looked too well developed. you could see it sucking its thumb - just like DD! Still decided to go ahead as we were there and geared up for it and I haven't slept since last Wednesday! Not as bad as I expected and just feeling washed out now - DH is waiting on me hand and foot! Results Friday pm so just fingers crossed till then.

Thanks so much for everyone thinking of me - very heartwarming stuff! Back to bed for me! SL xx

OP posts:
RTKangaMummy · 22/02/2005 19:05

hope you get a good rest now

lovely about sucking thumb

sending positive vibes +++++++++

HappyMumof2 · 22/02/2005 19:17

Message withdrawn