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

[Olihan]

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.

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.

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]

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

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

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

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.

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

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.

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.

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.

thoughts to you solucky xxx

How are you solucky?