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Twin Pregnancy but risk of Edwards Syndrome with Twin2 - some wisdom needed please

(38 Posts)
Olihan Tue 22-Aug-06 15:25:09

Solucky added this onto an old thread, thought she really needed her own one - here's her OP.

By solucky on Tuesday, 22 August, 2006 2:19:01

hoping for words of wisdom, please.
I am 12+5 weeks pregnant with non identical twins - absolutely delighted. Had nuchal on Weds, twin1 normal but twin2 result of 6.5. Local hospital sent us to Kings College Hosp. in London. Loads of scans, seen by loads of experts, each giving worse news than the last.
They said twin2 is much smaller, has heart defect, probably means Edwards syndrome, (usually babies with this die inside or shortly after birth).
Basically we were told to give twin1 best chance we must kill twin2 while it is still very small.(injection of gas into heart)
But this could cause miscarriage, or we wait and see if twin2 dies, if it dies late in the pregnancy it could cause miscarriage.
My husband is focused on best for twin1, but I don't want to give up on twin2, was so delighted to be having twins.
Where there's life there's hope - it was moving around on scan, heart beat strong. What if doctors mistaken, or a miracle happens.
Already have son 6yr, daughter 4yrs, so am trying to remember how very lucky I am.

Scoobydooooo Tue 22-Aug-06 15:29:00

I am really not sure what to say but wanted to bump this up.

However i do want to Congratulate you on your pregnancy & i really hope that whatever choices you make it is the right one & for the best. Goodluck i have my fingers crossed for you.

suzywong Tue 22-Aug-06 15:31:19

oh no practical advice
but so sad for you

Hold your son and daughter very clost to you tonight at bedtime and wish for the best for twin 1 and send a message to twin 2 that you love him/her and always will

Jimjams2 Tue 22-Aug-06 15:43:00

some info on Edward's syndrome . It's not always a case of death at birth or shortly after. Have they done a cvs? Not sure how that works with twins, but without a cvs they can't give a definite diagnosis of Edwards.

Jimjams2 Tue 22-Aug-06 15:45:07

these people produce a booklet I'd really try and track down someone who has been in this position, or failing that someone who has had a singleton pregnacy dxed with Edwards (or pataus as the concerns etc will be similar and the method of dx the same)

Poppetypie Tue 22-Aug-06 16:31:49

I have a close friend who went through almost exactly the same thing as you describe here.

She conceived twins in her third pg. At the Nuchal scan t1 looked absolutely normal but t2 had a thicker than average nuchal fold. She had extra scans etc and edwards syndrome was suspected. She then went on to have the CVS done but it wasn't clear whether the results had come from the babies or the placenta. The hospital thought that t2 definitely had some kind of chromosomal abnormality but couldn't say conclusively. She had an amniocentesis at 18 weeks that showed t2 had abnormalities on chromosome pair 5. Basically, the lower the number of the affected chromosome, the more the development of the vital organs would be affected. She was also advised to terminate t2 as it was unlikely to last the pg. T1 still looked to be unaffected. Unfortunately, her twins were also identical and there was a high risk to t1 in terminating t2.

Her and her dh spent a lot of time talking through what they wanted to do but their decision was complicated by the fact that they already have a severely autistic 8 year old who needs a lot of care. In the end they decided not to carry on with the pregnancy and the twins were induced at 22 weeks.

Their situation is extreme and unusual but I wanted to tell you because I think it shows that the 'dx' they give you at the nuchal isn't conclusive. You'll need to decide whether to go for the CVS/amnio and you need to be prepared for some more tough decisions depending on the results of them.

It was an incredibly hard decision for them to make but they made it together and I know in the months after they really questioned what they had done. In the end though, my friend knew she had done the right thing for her and her family and that's really all you can do.

I'm sure there are people on MN who know someone or who personally have had a big scare like this and either have had a positive outcome from the CVS and gone on to have a healthy baby, or have gone ahead and coped with having a disabled child. No one can tell you what the right or wrong thing to do is in this situation, it's up to you and your dh/p because you ae the ones who will have to live with it. The hospital staff can give you all the facts and figures but at the end of the day the decision is yours and yours alone.

I hope you are lucky and don't have to make any hard decisions and I wish you all the best, regardless of what happens.

Piffle Tue 22-Aug-06 16:59:45

Look this might not be the right thing to say but..
My dd also had a high nuchal result and heart defect on anomaly scan
They also suspected Edwards Syndrome but said that all chambers and blood flow in the heart looked good so they gave me a very positive outlook
Dd was born naturally on time, good weight and was given the all clear with nothing adverse found upon post birth inspection.
it later transpired she has Noonan Syndrome which is almost always not a terminal outlook.
Are they able to examine the heart in more detail to identify the exact defects
We turned down CVS and amnio as intensive anomaly scanning showed us that due to it being a minor heart defect Edwards Syndrome was less likely.
Do get as much information as possible and ask for second opinions.
As jimjams says can an s cvs be done on twin 2 to fully verify that it is Edwards syndrome?
A very tough time for you. For what its worth, my other half was taking the initial doctors word for it and tried to tell me that termination would be best.
I am so relieved I asked and demanded more information, it is your right to have everything verified 100 x before making such a big decision.
Good luck, please let us know how you get on
xxxx

daysoftheweek Wed 23-Aug-06 01:11:41

Can you go back and ask them how certain they are? From my reading of the contact a family leaflet amnio is the only test they can use to be sure (but don't know anything about doing an amnio in a twin preg) would that be possible? Need to find out risks too. So sorry you are going through this

threebob Wed 23-Aug-06 01:54:17

Have you spoken to someone from TAMBA? They might be able to put you in touch with people who have had a similar experience.

solucky Wed 23-Aug-06 12:22:18

what does 'dx' stand for?
thanks for the support - still don't know what to do.
Postponed yesterdays appointment for 'fetal reduction' until next tuesday - give myself more time to think.
Just don't want to stop being pregnant with twins - seems so very special to me.
Felt them moving last night for the 2nd time - seems very early to feel movement!

Scoobydooooo Wed 23-Aug-06 12:32:40

Oh solucky i feel so sorry for you I really really hope you make the right decision & the best fro your babies, can you have the amnio test & look further into this before making any drastic descisions? sometimes people do get these things slightly wrong or even totally so i would seek as much info as possible before you take any drastic action because it may be that you can keep your 2 little babies. xx
Do you have anymore thoughts on this?

ScummyMummy Wed 23-Aug-06 12:53:11

I'm so very very sorry, solucky. This was one of my most feared imaginings when I was pregnant with twins and I was like you very conscious of feeling special and lucky at having a two little blobs of babyness inside me from early on. I can only imagine that you're absolutely devastated. It must be so hard to know what to do for the best. I think suzywong's advice is as wise as any. And jimjams and piffle are right about getting as much information as possible. (dx stands for diagnosis, by the way). Good luck.

Jimjams2 Wed 23-Aug-06 13:07:35

dx means diagnosis- really think you should ask about cvs- cvs or amnio are the only ways to get a definite dx of edwards.

Piffle Wed 23-Aug-06 13:14:44

solucky, please ask for more opinions, get yourself armed with the most information, we heard everything with dd from death in utero to brain damage. if we had believed the first consultant who did basically tell us we had no other choice but to terminate, then I would be less one delighful stunning daughter.
Doctors are not infallible.
When dd was born a top cardiac specialist dx a huge hole in dd's heart that could lead to cardiac failure at any time
When we had her checked again by another cardiologist there was no hole, only a minor valve defect.
AS Jimjams says only an amnio/cvs can dx Edwards for sure
it is ok to hope for a miracle, really it is.

solucky Wed 23-Aug-06 20:47:01

thank-you all especially Piffle, that makes me more uncertain than ever about believing all that the experts say.
Feel that twin2 might improve as s/he grows - maybe kidding myself, not facing reality.
Who knows!!

Jimjams2 Wed 23-Aug-06 20:54:13

If the baby has Edward's then he or she will be very disabled. However you are often told that children with Edwards "will die at birth" and that isn;t necessarily true- in fact I would say is often untrue (although they would be expected to not survive infancy). I wish I had a link to a wonderful website by parents of a child with Patau's syndrome (a different chromsomal disorder- but with a similar level of disability), it made me rethink the way I thought about both Edward's and Pataus. I will search in a minute to see if I can find it.

I really think you need to ask about cvs or amnio though. cvs would be better if possible as is done earlier. Without cvs or amnio they cannot diagnose for certain, and you could be looking at something very different from Edward's. My friend had a big scare on a scan, on further testing her child did turn out to have a chromosomal problem- but one that may lead to sterility, nothing more- and only "may".

<<hugs>> at such a dificult time, I'll try and find this link now.

stridersmum Wed 23-Aug-06 21:00:38

With medicine advancing all the time you should be able to get definate diagnosis. As an ex paediatric nurse I urge you to arm yourself with all the info you can. Remember whatever happens you will cope and fingers crossed it is with things like feeding twins etc. My thoughts are with you ,
Srtidersmum

Jimjams2 Wed 23-Aug-06 21:14:26

Oh grr I can't find the website. I do think if you are being advised ot terminate then you need to know for sure that the diagnosis is accurate, which means cvs or amnio. One possibility for example would be a mosaic trisomy 18- which basically means that some cells would have the Edward's form whilst the others would be normal. Your baby would still be disabled- probably severely, but the outcome in terms of lifespan and ability would be much more optimistic.

Also do you have any access to counselling, have you been offerend any? I would say its essential you and your dh get some.

Jimjams2 Wed 23-Aug-06 21:27:40

oh and not just for twin 2- a termination would put twin 1 at risk as well, so you need to know for sure that the diagnosis is correct as a different condition may not be such a risk for the continuation of the pregnancy. I would have thought if the twins were non identical with 2 placentas that a cvs would be feasable. Have you got an appointment to talk through it with a consultant again?

solucky Wed 23-Aug-06 21:29:18

has anyone had cvs?
i'm scared it will lead to m/c of twins
haven't been offered any conselling
just really want both babies - sticking my head in the sand a bit.

NAB3 Wed 23-Aug-06 21:31:47

That is such awful news for you. I haven't read past your OP so sorry if asking Q's already answered.

Our last baby was thought to have Edward's Syndrome. Is your baby a boy or girl?

Some baby's will die before they are 1 but I recently read about a 9 year old girl with the condition. She seemed to have a fabulous life.

You have to think about all the options and how you can live your life with the decision you have made.

Is it definite that the baby has this? Have you rung the Ante-natal results support line? I found them lovely and very reassuring. I will go and read the rest of the thread now and see if I can help.

NAB3 Wed 23-Aug-06 21:36:06

Our baby was thought to have Edward's syndrome because he had 2 markers. This was at the 20 week scan. What are our doctors basing their opinion on?
I decided to have no more tests, refused point blank an amnio and decided we would have our baby whatever. I couldn't let myself think that I would only have him for 12 months though as I would have gone even more loopy than I already was.

Jimjams2 Wed 23-Aug-06 21:36:27

quite a few people on here have had cvs. The risk of m/c is small, (about 1%) but I don't know if that is the same for twin pregnancies. It's very hard to make huge decisions that will affect both babies without a definite diagnosis. Is there anyway you could talk to a genetic counsellor, or someone at the antenatal clinic. Is your midwife providing any support?

Jimjams2 Wed 23-Aug-06 21:40:11

and agreed nab3- I have heard of even teenage children with the condition (especially if mosaic). It's so especially hard to make a decision about a twin pregnancy when the decision could affect the other twin I sound like a stuck record but a definite dx is essential to make any sort of decision.

Jimjams2 Wed 23-Aug-06 21:43:01

oh I must change that, that came out wrong, I mean a definite dx is essential to make a decison to terminate, I know some people choose not to have further testing, and that I can completely understand (think that would be me actually!) I;m not saying you must have a cvs, just that they're asking you to make a rather large decision without one, so if there's reasons for them not to give you a cvs then fine, but they need to tell you.

Must go and eat, but will be thinking about you, stuck between a very large rock and a very large hard place.

Christie Wed 23-Aug-06 22:19:59

Just wanted to echo what Jimjams has said about Edwards Syndrome. We have a girl with the most severe form of Edwards at the special school where I teach. She celebrated her 12th birthday in July.

mrsdarcy Wed 23-Aug-06 22:51:49

I hope I'm doing the right thing in posting this link . The author was told that her baby had a condition incompatible with life, and wouldn't survive birth.

I had counselling during a difficult pregnancy (nothing like as difficult as yours) and it really helped me to cope.

CaptainDippy Thu 24-Aug-06 08:45:44

Oh, solucky - I have no words of wisdom for you except to let you know that I thinking of you and praying for you and for your DH and your children as you decide what to do. Please know that there is always a community of knowledgable, caring people here for you to post away to your heart's content to!! [[[hugs]]]

CaptainDippy Thu 24-Aug-06 08:46:23

The Shaming of the Strong is an incredible book mrsdarcy!!

morningpaper Thu 24-Aug-06 08:51:32

Solucky, so sorry that you are in this difficult situation. I would agree with those who say find out more and make sure that the diagnosis is 100% correct. There have been so many incorrect diagnoses on mumsnet, it is shocking. Get as much information as possible and make sure you have talked things through properly with a sympathetic consultant. Good luck, we will be thinking of you. xx

Marina Thu 24-Aug-06 08:59:49

Solucky, Kings (I am assuming it is Harris Birthright) is a very eminent place where great clinical innovations have been developed over the years. In my experience it is less strong on offering the empathy and kindness needed when such difficult decisions are to be faced.
I agree with everyone else here who has said that counselling independent of the doctors who are now suggesting the fetal reduction procedure could be helpful for you. ARC offer very good support, as others have said.
I have to dash but I just wanted to say that whatever you decide you will get lots of support here. XXX

milward Thu 24-Aug-06 09:00:30

solucky - thoughts with you xxx

just to add I had 5.5mm nuchal with dd3 then had cvs but results needed to be checked by amnio as placental mosiacism. Had amnio at 14 weeks - plus detailed scan. At this time thedocs could better check the baby as bigger to image. Scan took about 45mins - could this be an option. Never really got an ok until after the birth when dd had more scans.

solucky Thu 24-Aug-06 18:22:22

mrs darcy,thanks for the book suggestion - try to get it tomorrow
NAB3, haven't heard of the ante-natal tests results line, do you have a tel. no. for me? What was the outcome with your baby?
Marina, King's were brilliant, spent all day there getting worse and worse opinions from expert after expert, including the lovely Prof Nicholiadies (sp) but the general opinion from all was: abnormality = termination.
Maybe they can see the abnormalities are so dreadfull, and I'm not accepting what they say.

I am thinking I might have the cvs to confirm Edwards like Kings are saying, BUT cvs carries same risk, 5%, as termination of one twin. It's the shock for the needle going into uterus - I don't want to risk the healthy twin. But Prof Nich. explained doing nothing will probably be a larger risk to healthy twin, in case twin2 dies inside me at 20weeks.

WARNING-you might find this upsetting. I DID.

Large dead baby inside could release hormones which could cause m/c.Or they said I can look at twin2 at 30/32 weeks (if s/he lives that long) and then have a termination - then twin1 would be premature but viable. I found this really shocking, had no idea it was possible/legal.

It's all horrible - no easy answer.
I've never posted on a chatboard (or whatever this is) but a BIG THANK-YOU to all of you for your info/support. I really need it XXXXXXX

flack Thu 24-Aug-06 18:42:20

Could you get an amnio instead? I thought that Prof Nic's statistic for miscarriage after amnio was lower than for cvs, did he suggest amnio?
Could you bear waiting that long?

I heard a termination can happen all the way up to 39 weeks if 2 doctors will sign saying that the fetus has severe deformities.

Jimjams2 Thu 24-Aug-06 19:27:45

although from your point of view you might feel that once the babies had got to 30 odd weeks that you were happy to leave twin 2 to whatever its fate is I'm not quite sure what the point of terminating twin 2 is at 30 weeks (in terms of safety for twin 1, I can understand what they are saying about a termination now for twin 1's possible benefit, but why do it as 30 weeks rather than now? Is that safer for twin 1, presumably not if it's past the 20 week stage). Flack is right - for disability it is legal to terminate up to birth. I guess in your situation it would be worth asking what % of babies with Edward's syndrome die in the womb, and %' at each stage of pregnancy. It would perhaps give more of an idea on the risk to twin 1 from leaving twin 2

TBH I think you are in a situation where any choice comes with potential problems (for twin 1 as well as twin 2) and so the best decison for you will be the one that feels "right"- for you (and your dh) it's easier to live with something if you've felt "right" making that choice. I don't think there is a "right" answer unfortunately- it will just be a personal decision.

Thinking of you.

NAB3 Fri 25-Aug-06 11:43:55

solucky

phone number is Helpline:
0207 631 0285

My baby has turned out not to have Edward's syndrome. He has had some problems due to the trauma of losing his twin, and of his delivery, but he has had some cranio osteopath treatment and he seems to be all fine now.

milward Fri 25-Aug-06 21:20:01

thoughts to you solucky xxx

Scoobydooooo Sun 03-Sep-06 10:48:52

How are you solucky?

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