tests offered to older mums

[mckenzie]

When pregnant with our first child my husband and I declined all of the tests that we were offered but now we have to take DS1 into consideration and we are thinking about having some tests with this pregnancy.
I have my first midwife appointment on friday but i'd really like to find out from you guys what the choices are as from my first telephone conversation with the midwife, I dont think that she and I are going to get along. (I could be, and indeed hope that I am wrong about that).

We thought we'd decided on the nuchal fold follwed by CVS if necessary but I hear today from a friend who works in the medical profession along with her husband, that the amnio is better that the CVS and indeed her consultant who she highly respects would not do CVS.
Then I read in a girly magazine this afternoon really positive things about downs children and i think that i dont want to have any tests anyway. But is that fair on DS1?

I cant be the first person to be getting so confused about all this can I? Can someone offer any advice to help me get my head around this please?

[BetsyBoop]

The only risk that increases with age is the risk or trisomy conditions, the main one being Downs Syndrome.

You might want to read up on Nuchal Translucency scans (some areas it's on the NHS & some you have to go private) done at around the 12wk mark.

I found this site useful for information on the various tests available

You can look forward to being called a "geriatric primagravida"

I was 39 when I had DD (my first) and am 33wks pg with #2 - will be 40 when he/she born (or 41 if he/she is more than a week late )

[grinningbee]

Hi all,

I found out on Monday that I'm expecting my first. Still a bit in shock to be honest although it was planned!

I'm 36 coming up 37 and have just had my first telephone chat with the midwife (I'm only 5 or 6 weeks) and she has just asked me if I know what tests I'll want (I assume it's because I'm old and ancient in first baby terms!!).

I don't have the foggiest what is available, or if it is necessary, and I have to wait 3 weeks until I see the midwife.

Is there anyone in a similar situation that can put me at ease?

Thanks,
grinningbee

[Dingle]

Surely bringing your children up, to understand and accecpt disability is a good thing isn't it. For some it's just a way of life and they wouldn't know any different.
Sorry, getting off my soapbox now!

[Dingle]

Whoops, emotion overload....That last bit came out all wrong!
S/B "...a sibling with SN.." and "him"

[Dingle]

Sorry to post here Mckenzie, but after seeing the link from the other thread, I just had to comment about "siblings."
I have ds who has just had his 5th birthday, and my dd is now 2yrs 10 mnths, she has DS.
I do feel guilty sometimes that my ds gets pushed into the background, I fee I do take his intellegence for granted to a certain degree whereas with dd, I feel if I don't help her, it might not come naturally. But saying that I am the sort of person who will always run myself down, and if I wasn't feeling guilty about one thing, it would be another.
Ds had his first parent's evening back in July and the teacher stopped us before leaving, saying that she had to make 1 comment before we left.
She commented on his patience, his sensitivity,and his understanding towards the others in his class. She said that he was one of the only children in his class to sit down with a particular little boy in his class, who happens to have autism. She said he tries to motivate him, engage him in conversations and generally encourage him.
If having a sibling has left much of an impression on his, I would like to think it is for the better.
Whatever happens, be happy!!

[Thomcat]

Good for you Garbo , hope it's a graet pregnancy with a wonderful happy, healthy baby at the end of it all

[garbo]

I too have decided on no tests, well I think I have (here I go again). I missed the slot for the nuchal translucency, so just have to turn down blood tests at next midwife appt at 16 weeks. Still slightly wavering and wondering if I should. However last pregnancy given 200/1 chance of Downs, and went on to have amnio, which was hideous. After seeing my baby waving its arms and legs on the screen at 13 weeks, feel I couldn't terminate anyway. Reading through previous threads, messages,etc, has helped me feel more positive about saying no.

[Thomcat]

I've just sent you an email through mumsnet.
Lots of love - TC x

[Thomcat]

I'm SO pleased . i'm just about to leave for the day and won't be back here till Monday and that bit of news is a nice way to end my working week.

If you email me through mumsnet when i get in on Monday I can email the article in Eve over to you.

Really am so pleased that you feel less sick, less worried, more relaxed. massive !

[mckenzie]

hiya Thomcat

feeling much better thank you and convinced that all the sicky feeling was down to worrying about the tests and not the actual pregnancy.
Now that we've decided not to go ahead with any testsand a decision has been made I feel so much better.
Thansk again for all your support and I shall ask my DH to scan the Red article tomorrow. I'd love to see the other one too, thanks.

[Thomcat]

Thanks McKenzie, would love to see it, will try and get a copy but if not if you could scan it in and email it over that would be great. Did you see the 'interview' I did with aloha ( a Mumsnetter) in Eve magazine about Lottie? I'll email that over to you if you didn't in return for the Red feature.

How are you today / tonight? Are you feeling alright about 'stuff'?

[mckenzie]

Thomcat - it is the August edition of Red. They did an article in May apparently which was very negative about life with Down's Syndrome and on page 22 of August there are some letters in response, and totally opposing the May story.
If you cant get hold of it I can scan and send you my copy.
Thanks again for all your postings.

[Jimjams]

That's a strange reaction eidsvold (the people who were surprised that you decided on another child). Although thinking about it I've had a lot of that this pregnancy as well "ooh haven't you got enough to cope with already?" etc.

maybe its a common reaction though- I remember my MIL (who has the strangest reaction to disabiity I've ever come across- so no wonder she pretends theres nothing wrong with ds1) talking about someone in her family who had a child with DS then went on to have another child and going on abut how "brave" she was. This was before we knew ds1 was autistic but I remember thinking it was a stange way to think even then.

[eidsvold]

i was not going to add to this but like tc I have a dd who also has down's syndrome... she was also born with a heart defect. Her heart defect was detected at the 20 week scan and then via fetal cardiac scans... a very confusing and upsetting time. We were also informed that the defect was a hard marker for Down's syndrome. Both dh and I did not see that as a difficult thing to have to deal with in our lives ( friends who have children with down's and can see what they have achieved). I was offered and amnio and refused. Dd's heart defect was repaired through surgery at 8 weeks old and she now has a 'normal' heart to quote to cardiologist and it just means check ups every year or so. Okay it was difficult with her being in hospital for six weeks all together ( three in SCBU and three in London) and we only had one child at that stage. Every positive thing tc has said about her little one I can say about mine.... she is truly amazing.

Now at 35 turning 36 ( a geriatric mother according to a medical professional) I am pregnant with no2 and they have found a very soft marker for Down's syndrome. I knew that my risk of having another child with down's syndrome is higher than the average woman my age as I already have dd. We again opted for no further testing...

In fact - we felt that we could cope with Down's syndrome and on the upside - at least we don't have a heart defect to deal with like we had last time.

some people have made different comments from surprise to shock that we have decided to have another child after dd and all we went through... you know - why would you choose to have another child when you already have a child with special needs.... I just ask why not?!?!

Here is our story - here page 7 and 8
well up to dd's 1st birthday, she is two on Sunday and having her first birthday here in Australia.... having emigrated from the UK...... she coped amazing well with that transition... and I am enjoying being home with her after working for the last school year. SHe went to a mainstream nursery and was the star attraction... all the nurses knew who she was along with the children... she managed to charm them all.

hope this was a help and did not add to your confusion

[Thomcat]

Came on before bed especially to check that you were ok mckenzie. SO glad that appears to be the case. I know it's all good and all that we can check on the progress and health of the babies we are carrying but blimey does it ever streee women out as well. I really DP hope you feel less stressed out and more comfortable with things.

I do indeed consider my daughter to be perfect, she is. (she's a pain in the backside as well sometimes!) she's just got Down's syndrome, she's still perfect.
She's part of lifes rich tapestry.

PS - By the way Mckenzie what was the mag with the positive stories that you mention in you first post?

[mckenzie]

oops

[mckenzie]

thanks jimjams, now I'm weeping!! Happy tears though [smile}

[mckenzie]

DH has just got home and hasn't read what I printed out for him so no discussion tonight then! Never mind, I've decided what i'd like to do and something tells me he'll agree.
Thomcat - you did help me feel better honestly.

In fact, I feel so good about all this now that i think I might even splash out on a new maternity bra tomorrow - these bones are killing me!

[Jimjams]

Oh mckenzie- something else occured to me. Charlotte Moore has written the book "George and Sam" about her 2 autistic sons. She talks about her NT ("normal" son Jake a lot as well. The book finishes with these lines. Jake is asking about death....

"he only began to cheer up when he remembered that someone had told him about the theory of reincarnation. 'Mum' he gasped, his sobs receding, 'please tell God that when I come back in my next life I want exactly the same brothers I've got now'. I hope he always feels like that."

[Angeliz]

mckensie, your little boy sounds lovely. Don't they come out with the most profound comments?!!

I am 9 weeks pregnant and aged 30 and have already been informed about the blood test to assess wether i'm high/low risk.
I read all the info provided and i am not gonna have it!
I just feel that nothing is 100% fool proof, Docs are sometimes wrong and that i really have enough to worry about for the next 7 months without added stress! Others probably disagree, i'm just giving you my personal opinion.

I guess however daft i just think ignorance is bliss till it's time to say hello and then we will deal with whatever comes our way!

(I will be having the anomaly scan at 5 moths though so fingers crossed all will be well)

Good luck with whatever you do,i've rambled on but i think that's cause it's close to my heart at the moment aswell++++++++++++++++

[Freckle]

I had DS1 at 37, DS2 at 38 and DS3 at 41. I had the nuchal fold test with each. With DS2, I was part of a research project at Kings College Hospital and, at that time, I think the parameters were set very low to catch as many potential problems as possible. I now know that the result of the test I had with DS2 would not prompt any further testing. However, at that time, I was advised to consider a CVS. In the end, we did have the test - not because we would have terminated, but to be prepared for whatever it would reveal. The result was fine and all 3 of my boys was born "perfect". I put that in "" because it rather depends on your definition of perfect. I suspect that Thomcat considers Lottie to be perfect and ggglimpopo considers her daughter to be perfect too. So who is to say what is perfect?

My only advice would be to consider fully what you would want to do depending on the result. If you have no intention of terminating, are you having the test to prepare yourself? If so, good, just make sure that you make use of the knowledge and find out as much as you can about the condition and support available to you. Also consider that, even if you currently feel you would terminate, when push comes to shove, you won't be able to and you should prepare for that too.

[Thomcat]

No your not pants. This is always such a stressful time for mothers. I was hoping to make you feel a bity better about the DS side of things, I hope I haven't actually ended up adding to your stress. I'm sure you'll have a healthy, happy pregancy and a healthy happy baby. Once you've chatted to your husband try and relax and enjoy your pregancy. At the end of the day though we're women, we're mums and worrying is our job. My friend had a bad cough in her pregancy and worried herself sick she'd damaged the baby. I worried my baby would be born with a really bad cleft palette. We all have our own worries and theres nothing we can do about them really, we're human! I just wanted to try and make you worry less about DS.
Lots of love to you, TC xx

[mckenzie]

thanks Thomcat. To tell the truth, I'm not even sure why DS has been the main thing that i've been talking about - I guess just because it's a condition that I can put a name to and recognise. It is really any type of condition/illness that concerns me. But, and I do feel stronger about this every hour which is mainly thanks to all you guys, unless DH comes home tonight and throws a huge spanner in the works, I'm going to opt for no tests.
I'm getting upset with myself now and the stress of deciding is probably what is making me sick rather than the tiny little thing making itself comfortable in my womb.
So, now I need to hope that nobody posts on this thread anymore otherwise I shall keep looking at what others write and keep thinking!

I'm pants aren't I?

[Thomcat]

mckenzie - I found out I was preganant when I was 4 months gone so the only tests I had were the normal blood tests carried out. I was put in low risk group. Had scans from the day I found out I was pregnant. Had no idea that Charlotte would have DS and am happy that it all happened the way it did for me. I REALLY enjoyed every minute of my preganncy, not that i wouldn't had I known, I'm just saying, I was relaxed and happy and looking forward to the birth and being a mum. Then lottie was born and there was a short period of grieving for the child I thought I was having and a period of re-adjustment and after that, a day or 2, it's been perfectly normal and happy and never a problem.
Having the tests and preparing yourself is an option but really what is there to prepare yourself for? Babies with DS are just the same as any other baby. Yes some are born with a heart problem but a non DS child could be born with that, you'll just deal with it as you have to, let's hope you don't have to.
Apart from that there's no difference.
A child born with DS will be a bit slower to learn, but a non DS child could have learning difficulties.
A child born with DS may be slower to walk, but then again they might not.
A child with DS may not turn out to be a doctor but whatever they do do you know they really worked hard at and got there despite the odds so will be so proud of them. A child with DS will walk, talk, run, ride a bike, swim, go to mainstream school, talk, sing, and love you unconditionally, as you will them.
DS is only one thing that you can detect in the womb, what about every thing else? Are you going to worry about all those things too? If for some reason you feel the chances of your baby having DS are high then do a little bit of gentle research but not too much.
Would you like me to send you some links or some info or can I do anything else to help in any way?

I hope you don't think I'm being pushy or anything horrid. Whatever decision you and your husband make I would support it. i just want to do by bit to reassure you if that's what you were after.

[zebra]

Nothing is guaranteed, McKenzie. I think one of my fears is that I wouldn't bond to her/him if my newborn was less than perfect, but probably it's groundless because it's a very weird mother who doesn't bond, regardless of her offspring's imperfections. Maybe I'd bond all the more, knowing how much more a disabled child needed me. And even a "normal" baby will take up an awful lot of attention you might otherwise be giving your first-born.

FWIW, I was very clear in my first 2 pregnancies that Downs was one of the conditions I certainly would not terminate for... esp. with my 2nd baby, because I badly wanted a 2nd child and I was convinced I would never be willing to subject myself to such horrible morning sickness ever again! So I do see all sides of the issues you're grappling with.