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Original poster

Risk of Downs

17 replies

Mousesmummy · 01/11/2011 20:47

Can anyone please advise or point me in the right direction? My beautiful friend is 37 and pregnant for 1st time, she had her 12 week scan last week but has been rang today to say she is high risk of having a baby with Downs, 1:70 - she has to go back in tomorrow for further scan +/or tests. She is so worried - I am asking for any help as to how I can help her through this stressful time? I am just so upset for her as this is a much longed for pregnancy? Can anyone help me to support her through this ?

OP posts:
10000fireflies · 01/11/2011 21:11

Mouse - what a wonderful friend you are to be supporting her through this. I can only suggest you are there to support her through whatever she decides to do. I found another recent thread you might find useful, which also links you to others: www.mumsnet.com/Talk/pregnancy/a1306852-12-weeks-possible-downs-syndrome

Good luck to your friend, and wishing you all the strength to help her through it.

fifitot · 01/11/2011 21:16

Try the antenatal tests/choices board on mumsnet - lots of good advice and info on there.

Your friend should talk to Arc who have a helpline. Think their site is www.arc-org.uk but if it's not please tell her to google it, they are really helpful.

BTW 1 in 70 is not the worst odds that have resulted in a good outcome.

Original poster
Mousesmummy · 01/11/2011 21:18

Thank you 100000fireflies - i will look at that now - I just wanted to cry but know I have to get a grip and be positive for her etc etc - just so wanted it to be all happy days for her after all this time waiting - thank you

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Original poster
Mousesmummy · 01/11/2011 21:19

Thank you fifitot x

OP posts:
bettieblue · 01/11/2011 21:39

Hi

You are there for her which is brillant. I was 40 when pregnant and 41 when I had DS. My age risk of downs was 1/90 and after my 12 week scan (blood and nuchal scan) it came down to 1/65. I had an amnio at 15 weeks because i knew i wouldn't continue with a downs pregnancy. I gave birth to a healthy boy. As filfot has said her odds are not the worst, i know i was besides my self with worry and shes lucky to have your support. I read lots of positive stories on here but the reality is until you have the results you can't help worry. All you can do is listen but I knew what my decision would be if the tests had been positive, it might help to talk about what ifs if she wants to ..... if she doesn't just be there for her.

Original poster
Mousesmummy · 01/11/2011 21:43

Thank you bettieblue x

OP posts:
mumt1 · 02/11/2011 08:09

This must be heartbreaking and such a difficult decision for her, but I do know a few people who where high risk and have perfect healthy children. But there is that chance..if she wants to go thru with it then gd on her, and downs syndrome people have been some of the nicest people I have ever met in my life. (Studying to be paramedic so done care work).

noir · 02/11/2011 08:19

This must be a really tough time for your friend (and for you trying to support her!). To add another perspective to this thread I know many young Mothers and older Mothers who have beautiful, perfectly healthy children who happen to have Downs. My own brother has Downs and apart from a slight heart murmur which he grew out of as a toddler, he never had any health issues. He is now a hugely emotionally intelligent man and leads a happy and fulfilled life working towards independence.

For a balanced perspective on screening (and the risks of false positives) it might be worth reading The Politics of Down Syndrome, alongside the literature given out by the NHS.

and downs syndrome people have been some of the nicest people I have ever met in my life

So patronising.

mumt1 · 02/11/2011 08:30

Okay. Might of been slightly patronising but 100% true

noir · 02/11/2011 08:34

Apologies Mumt1 that sounded rather blunt! I can see you meant well but what I meant is that, whilst it might be your experience that the people with Downs you met were lovely, it is a stereotype that they are all wonderful cuddly nice people.

People with downs have personalities as broad and as varied as the general population. Thinking just of my brother's immediate group of friends (who all have downs) one can be moody/ aggressive and was a handful as a child (he is adopted and has experienced a lot of separation and loss), another is very geeky and quiet (I would argue he is more mature than the rest of the group despite the youngest), their closest female friend is very gentle, quiet and kind, my brother is outgoing, a charmer, a ladies man and like I said above very emotionally intelligent. They're all very different.

kelly2000 · 02/11/2011 14:04

Is there some sort of group where she can go and speak to parents of downs children, and people with downs to see what they life is actually like.
(although if she decides not to go through with it this might make her feel bad so be careful)
This is going to sound stupid, and I will probably be flamed, but has she actually thought about why she thinks of downs as bad. I think there is an automatic assumption that downs equals bad, but this does not have to be the case. A baby born without any "disorders" as it were might grow up to speka ten languages and have a phd in rocket science, but might still be avile person who brings misery to everyone close to them and is miserable themselves. Whereas someone with downs might never win a nobel prize, but might be a really nice person who makes those close to them happy and is very happy and content themselves.

AltMama85 · 02/11/2011 14:19

hello! i have a 1 yr old DD. i was only 25 when i was pregnant with her and the downs/trisomy risk for me was 1:15. yep, 1:15!! it still makes me shudder and wince now looking at it. Don't do things like advise her to go and visit places/speak with ppl with down's etc etc it will only scare her and be extremely overwhelming when the chances really are in her favour that her baby is going to be just fine. deal with what you KNOW for fact, not if's but's and maybe's. waiting for my amnio and the for the results was easily the hardest 3 weeks in my entire life. i had just had an ectoptic pregnancy, lost a tube and been told i had endometriosis so was likely infertile - a month later i fell pregnant with this little miracle child - so to face losing this baby who i could feel kicking me (i was almost 18 weeks when i got results) was too much to handle. I literally screamed and screamed for all of my waking hours, i smoked (i know how awful that is i HATE that i did that but with a 1:15 chance i was convinced i'd lost my baby) and relied heavily on the support and utter devotion of those around me to hold me up. you sound like a great friend so i probably dont need to tell you not to judge whatever choices she makes, just love and support her and her OH. no-one can understand or hypothesize on this subject truly until you've been there, i always thought i knew what i'd do - but facing the reality is so very different.

also be wary of Dr Google! i read things like even if my baby had no chromosomal problems it could be born early/still or be a very low birthweight etc etc

but in reality my girlie was born four days late, perfectly healthy and 9lbs 5oz.

AltMama85 · 02/11/2011 14:24

oh and FTR i would have kept her if she'd tested positive for downs, but edward's was a risk indicated in my particular case and the quality of life is terrible for those children in the extremely unlikely event that they live pasta few hours old. downs i'd deal with - edwards - no

but that's a personal choice and i totally respect and admire the strength in whatever choice a mama makes in that situation

AltMama85 · 02/11/2011 14:24

past a NOT pasta lol

BigCC · 02/11/2011 21:03

I would suggest that OP does encourage friend to go meet some babies with Down's - most profitably in a setting like the Sarah Duffen centre in Portsmouth or the ECCDS in Darlington, where children with DS have had great developmental help to achieve their potential. Even the last five or ten years have seen unbelievable advances in what is possible. I was given a high probability of having a baby with DS, went through all anomaly scans etc then when she had no physical defects (including perfect Nuchal Scan, no heart defect), ruled it out as a possibility. When DD arrived in January this year with that one extra chromosome I felt annoyed with myself that I hadn't found out more and couldn't immediately get into gear to help her out.

BigCC · 02/11/2011 21:12

I'm not sure how to do links but here www.dseinternational.org/en/gb/ and here www.eccds.org.uk/ are the places I mentioned. The Down's Syndrome Association is also good. Good luck with advising your friend - its not for anyone else to decide and she is very fortunate to have a good mate like you.

Original poster
Mousesmummy · 03/11/2011 12:52

Thank you everyone for taking the time to reply - much appreciated x

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