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Antenatal tests

Have you been the 1 in xxx?

16 replies

glimmer · 15/06/2011 21:11

I have: the 1 : 1 000 000 for severe complications after a D&C and the 1: 20 000 000 for
a rare problem with my child. I don't think I have ever fully recovered. Maybe it would help to share our stories?

OP posts:

Report

flower11 · 15/06/2011 23:05

Hi glimmer
It sucks to be the one, everyone thinks their pregnancy will be ok,and that they wont be the one. I was so nieve about all the things that can go wrong, it was my first pregnancy, my baby had anencephaly which I had never even heard of. I keep thinking what did I do wrong, but there is nothing you can do its just fate and that makes it so hard. I have moments where I think why I am I being puished, why, why, it drives you crazy.
xx

sharbie · 15/06/2011 23:08

i have been the 1 in 30,000 or rather dd has
i refused all tests in my pregnancy as it didn't matter to me
her problem wouldn't have been picked up anyway
it was a complete fluke

StormBird · 16/06/2011 05:52

Hi All

I've / We've been that 1 too!!

Last May at 15 weeks we discovered that our baby had Annencephaly. Like Flower11 it was our 1st Pregnancy and we had never even heard of it before either. After a long discussion we decided there and then that a termintion was best all round. The fact of the matter is I would have only miscarried in late pregnancy or the baby would have been born and only survived for an hour or so if that. I was booked in for a Termination the next day.

It plays on my mind alot and It was the hardest decision of our lives but we both agree we definitely made the right choice.

More than a year on I'm now 36 weeks pregnant. This pregnancy hasn't been plain sailing either as we came out with a 1:43 chance of downs at the Nuchal appointment but after a CVS we got the all clear. It doesn't stop me from worrying that something could still be wrong though - but this is out of our hands I suppose!!!

For a young, healthy couple who expected to find having a baby slightly more straighforward than we have done, it was a lot to get our heads around.

Its just amazing how many people you find have had similar problems once you start to talk about them openly. It kind of makes the initial Odds seem ridiculous.

I hope you can gain some comfort from other peoples stories Glimmer

XXX

deemented · 16/06/2011 06:33

Yes, i've been that 1 too.

DS1 had a condition called posterior uretheral valves. It's quite common in young boys. Less so in babies in utero. Virtually unheard of in incidences of twins and his was the first case ever recorded in a triplet pregnancy. Because he was a multiple, anything we would have done to save him would have been potentially fatal to our other baby, so we had to decide to do nothing, not that that was ever a proper choice.

It's over seven years now since we had his diagnosis, and in September it'll be the anniversary of his birth and death.

I still agonise over every single decision i made back then, but i realise now that the challenge isn't to find out the answer to my questions... more in the learning to live with the questions themselves.

saltyseadog · 16/06/2011 06:39

Yep. We're that one too. DD has a syndrome so rare it doesn't even have a name.

glimmer · 16/06/2011 21:47

I mean I understand the concept of chance and that somebody has to be the one. And I understand that often we live up to the challenges and that maybe our lives become fuller and richer in a certain way. But emotionally I do feel I was singled out by fate/chance so often and I ask myself "what have I done wrong".
All I wanted was to have an average life with a lot of work and a bit of happiness. Maybe this is not the right area to post this, but I thought people like myself will lurk around here.

Salty and Sharbie - we have a support thread going in the SN section -
you are welcome to join!

OP posts:

sharbie · 16/06/2011 22:16

thanks glimmer although dd was pretty much treated and cured by the age of 1

i think it is perfectly natural to blame yourself - you are looking for a reason as to why this has happened to you.i was v v careful with my first pregnancy with ds and did everything by the book.with dd i was so so sick i really was too ill to worry and take so much care - i didn't do anything wrong as such but i did think that something went wrong this time because i wasn't concerned enough/took my eye off the ball.crazy but it drives you mad trying to rationalise events in your head.it took me a long long time to come to terms with the fact that i didn't have a healthy baby just a load of worry.its really not fair.
what you are saying is perfectly normal imo glimmer.

louzie · 17/06/2011 22:49

Yes - my baby was the one in around 15,000. Having had 3 perfectly healthy pregnancies and babies, I never expected to hear terrible news at my 20 week scan.

It's hard for me to keep any statistics in perspective anymore. I figure that I've been the 1 in 15,000 before, so why not again for something else?

MyangelAva · 19/06/2011 20:34

I agree louzie, I was the 1:189,000 for Edwards Syndrome and it's hard to believe in statistics any more.

But we didn't do anything wrong x

Creamandcustard · 19/06/2011 20:55

Me too - at my 20 wk scan 5 years ago. The most useful thing anyone said to me was not to think "why me?" but instead "why not me?". That helped in that I realised that there is no protection against pure chance.

I've since gone on to have 2 dc's (pg with dc3 now) and I don't think that worry ever goes, although I do think being more prepared now for scans etc helps. One of the worst things about that whole time was the pure shock, like other posters have said I had no clue to prepare for potentially bad news.

goingdownhill · 28/06/2011 22:21

Yep we have been the 1. Our darling dd2 had 3 separate brain anomalies, complete agenesis of the corpus callosum, lissencephally and 3 cysts in her brain. The odds for any of those conditions are tiny, all three occurring I can't even do the maths. She was our longed for 4th child and having had three healthy children I never thought it would happen to us.

Her birth and death is the worst thing that has ever happened to our family, I don't believe in happy ever after anymore.

LunaticFringe · 28/06/2011 22:28

This reply has been deleted

Message withdrawn at poster's request.

fuckmepinkandCALLmegoran · 28/06/2011 22:33

Yip. DS is 1 in 500,000. And in his case, he's even more because the condition he has is incredibly rare in children as young as he was.

jellybeans · 01/07/2011 20:00

Yes I know how you feel. I have been the '1' several times. My DD had a very very rare syndrome which is supposedly 1 in millions. Made me realise that anyone can be the one anytime.

HumphreyCobbler · 01/07/2011 20:04

yes. it has left me with the sense that bad things can happen to me at any time now, although I struggle against that feeling.

BlueCat83 · 04/07/2011 11:53

Yes been the 1 too. I in 5000. life is cruel and i too find myself asking, why me? Would have been due a week on Sunday and everywhere I look heavily pregnant woman xxx

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