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Antenatal tests

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Original poster

My poor dear friend has found out her 24week term dd has Edward's syndrome

22 replies

Curiousmama · 10/02/2010 16:28

She has to terminate

She's 41 and it's her 3rd dc. She married baby;s father recently and he left her, now they're back together but he seems to find it hard to be faithful

I wish I lived near but we're miles apart. I think I'll try to get up soon and spend some time with her?

OP posts:

fifitot · 10/02/2010 18:11

Terrible news. How did they find out? Scan?

Peaceflower · 10/02/2010 18:17

I feel for her. A friend lost her dd a few weeks after birth. It had not previously been diagnosed. So sorry.

lou031205 · 10/02/2010 18:21

I hope not to be insensitive, but is your friend aware that she could choose to carry to term? My friend had a dd with anencephaly. They were advised to terminate, but continued until 42 weeks, when they had 3 precious hours with their beautiful daughter.

Cantdothisagain · 10/02/2010 18:27

Really sorry to hear this. Horrible news to have at that gestation. Good luck to her.

Original poster

Curiousmama · 10/02/2010 19:19

Thanks for your replies. Sadly she can't carry to full term she's been suicidal with the marital troubles as it is, has a very stressful job so I think carrying the baby would only add to this stress

Plus 5% of babies with Edward's syndrome live up to a year at most with many major problems including infections and probably be unable to feed. It's so awful I can't believe it, she's a wonder kind person and has nothing but horror in her life.

I can't wait to be able to squeeze her so hard. I said to dp I'm going to make the effort to get to see her even though it'll cost financially but I have to.

OP posts:

FabIsGoingToBeFabIn2010 · 10/02/2010 19:20

Who says she has to terminate?

Baby's with Edward's syndrome can live, one girl I read about was 9 at the time.

So sorry for the shock she must have felt.

SparklyGothKat · 10/02/2010 19:27

very sad

HumphreyCobbler · 10/02/2010 19:42

It is a terrible decision to make. IME doctors do not tell you that there is the possibility of children living. Also it is a very very small chance. Most children with Edwards syndrome do sadly die before or just after term .

My baby had Patau's syndrome, I did make the decision to terminate. It was very hard.

So sorry.

helenium · 10/02/2010 19:45

really sorry to hear this. Poor woman, and her man sounds a complete tosser.

mathanxiety · 10/02/2010 20:08

Some Edward's parents share their experiences here, also medical information.

NumptyMum · 10/02/2010 23:24

Curiousmama - your friend could probably do with someone to hold her hand, esp if her other DC are young and the father is being an idiot. Have you been in touch with her about visiting? Reading between the lines, if she's 24wks she would have found out something on scan and then had amnio. It is a VERY stressful, distressing time from the horror of the initial bad scan, through to having amnio and then waiting for the results; and if her partner is not supportive having someone in RL to cry on or distract the kids may help. However different people cope in different ways, so perhaps say you'd like to visit, to do whatever (cook, clean, play with DCs or talk) but see what she says. She may just want to hide, be tired and sad and unable to be with others for a while.

Has she been in touch with ARC (Antenatal Results and Choices)? They are a charity who offer support and information that might help her at this time, including coming to terms with the whole thing. I spoke to them when we had our diagnosis of Patau's (13wk scan then CVS) and they put me in touch with a volunteer from SOFT UK (support re T18 and T13) who was really lovely and non-judgemental and who helped me a lot. I don't think ANYONE would make a decision to end a pregnancy at this stage lightly; and yes, babies with these conditions can live, but there is a lot to take into consideration regarding the individual circumstances, the individual scan indications, other children etc etc. If she needs to talk to anyone, she can also come here - we've all been through it and know what hell it is, this 'choice', and living with the loss of a longed-for baby.

You are obviously a good friend as she has trusted you with this information about her pregnancy, I hope you can support her somehow through this time.

Original poster

Curiousmama · 11/02/2010 13:24

Thank you for all your information I'll pass it on to her.

She does have good friends where she is, one is going to the hospital with her. Her other dcs are 13 and 19.

I'll get there as soon as possible though or she may even want to come here for a change of scene? Just have to see.

OP posts:

Original poster

Curiousmama · 16/02/2010 10:38

My lovely friend gave birth to her dd on Sunday. Stillborn as they'd stopped her heart but not without first having an horrendous time at one hospital trying to do this whilst the baby was moving and she only had a local They had to transfer her to another hospital who were fantastic.

I'm so so very sad and feel frustrated that I can't do anything. I will press her to put a complaint in though once she feels stronger but right now it's the loss that's so deep.

Her dh was great apparently which is a blessing. He's devastated too. I'm just glad he's being a man and supporting her at this time.

I'm shocked how sad I am though. I feel even worse than when I had to go through something like this myself although not anywhere near as bad. I had a scan and baby had died and I had to have a D&C but I was only 12 weeks. I didn't have to go through them killing my baby

She said her dd looked so beautiful like a little doll. The hospital let my friend the shawl she wore.

They're having a private cremation just the 2 of them and then scattering her ashes on the family plot miles away.

I'm going to go and visit very soon or else she's coming here if she feels up to it.

Thanks for all the support it helps to be able to get it all down and talk to others who may have been there.

OP posts:

Original poster

Curiousmama · 16/02/2010 10:45

I meant let my friend keep the shawl

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RnB · 16/02/2010 10:54

so sad really sorry for your friend. I'm 25 weeks atm, can't imagine the pain she must be going through

Original poster

Curiousmama · 16/02/2010 11:17

Thank you RnB and wishing you all the best.

I just rang my friend, I'm going to donate to SOFT uk instead of sending flowers or anything else. They support families in this and similar situations.

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ZiggyMama · 16/02/2010 11:49

You are being a good friend, CuriousMama, & that will count a lot in the weeks, months, years to come. Lots of love to you & your friend.

Original poster

Curiousmama · 17/02/2010 08:48

Thank you ZiggyMama. We've always been close, she's moved all over even emigrated but we stay in touch, been through a lot together. She's one of those friends you may not see for years but when you do it's like yesterday.

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ButterPie · 17/02/2010 09:05

That is terrible. Your poor friend.

Original poster

Curiousmama · 17/02/2010 15:02

I know it's dreadful. Just hope she can get strong again one day but it's a lot to cope with and you'd never get over it.

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ZiggyMama · 17/02/2010 20:11

It might help that you are distant but there, if you see what I mean. She will get through this, but will need lots of help in lots of different ways.

Original poster

Curiousmama · 17/02/2010 22:37

Yes I was thinking that too ZiggyMama, she can tell me things and open up more anyway but me being away means she can say anything.

Still can't wait to hug her though.

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