Nuchal fold/MSS dilemma

[lazyeye]

Hi all

Sorry if there has been a similar thread as I think there has been lately, but just had some additional questions.

I'm 35 (be 36 when I deliver) and have 2 other children. Got a really good nuchal fold result at 12ish weeks - 1 in 1600, but my MSS has come back 1 in 132. I felt a bit rushed as an appt was made the day after I heard the news to discuss with consultant with view to poss amnio. I've had 2 m/cs in the past. Rang RVI where I had nuchal and they said if I was under their care (am under local hossie) they would have me back now I'm almost 19 weeks and look for other markers. On that basis I didn't attend the appt with the consultant. Has anyone else gone down this route? How reliable will a second scan be at this stage?
Which is more reliable - N fold or MSS - m/wifes say I shouldn't have had both, but I thought they needed it for other things.

Help.....have had worrying weekend.

Good luck, Lazyeye. Very Sorry to hear it's so dear to go to King's. Don't think your consultant would have any right to be angry with you; if Kings can quote a lower miscarriage rate, you'd be completely rational to go there instead.

Probably a stupid question as well, but one which has been worrying me on top of everything else.........this pg feels different.

With my 2 sons I did feel quite sick but it stopped around 15 weeks. I'm now 21 weeks and still feel queasy most days...very sick some & if I cough even slightly, I throw up.

Somebody said that carrying a downs baby can make you feel ill or iller than normal. This is proabably rubbish.....but any views?

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There's nothing in the whole of Pubmed to suggest that carrying a Down's baby increases nausea, but I was like twiglett, much sicker when I was pregnant with a girl, and for much longer. I would really try not to worry- impossible I know.

lazy eye - I have a child with down's syndrome and I had morning sickness only for a few weeks ( fdrom about 8 - 14/15 weeks) and then not very badly - one puke in the morning and I was fine for the rest of the day. In contrast my sil was ill for her entire pregnancy - child does not have down's syndrome. I also worked full time teaching until 36 weeks pregnant. The only thing I have heard from others is that girls made them sicker than when pregnant with boys... perhaps you are having a dd.

I did not have a nuchal fold or mss test or an amnio.

My child's down's syndrome was linked to the heart defect that was detected at 21 weeks. I was then sent to Kings for a fetal cardiac scan which confirmed the particular type of heart defect - turned out - very common in children with down's syndrome. was offered an amnio and refused for a number of reasons. Biggest one being that the outcome of the amnio would not change anything.

I know you are experiencing a great degree of uncertainty at this time - but from a personal perspective having a child with Down's syndrome and a congenital heart defect did not shatter my life - just made it different. At this stage she is our only child but we are definitely planning more.

But having said all of this - at the end of the day you need to do what you feel is best for you.

View: as far as I understand, having a baby with chromonse defects gives you LESS morning sickness, not more, than average. Maybe because the placenta tends to function less well than it should. So feeling sick is actually a GOOD sign, at least where chromosone defects are concerned.

Oh Eidsvold - I thought afterwards that maybe my choice of "shattered" would upset anyone with a DS child - I'm sorry. I'm just very worried of the effect with 2 such young children already - 3 and 1. I probably know I could never terminate, so am trying to face up to what might be, and I know it would be very, very hard - its already pretty hard with 2 kids alone I think that was all I was trying to say. Rightly or wrongly, I'm also facing a bit of pressure from my mum and sis to have the amnio (and defo from my sis if it was DS to terminate) because they just think I couldn't cope. I'm not the most organised of pple a bit slapdash and they just think I will spiral into total bedlam. Anyway, pls accept my apols. We will see what the 20 odd wk scan brings.

IF you want to do some reading about Down's syndrome - try

here

and here is my story

here

and Thomcat's - I am sure she would not mind me sharing this...

here

My biggest worry about having dd was how other people would treat her throughout her life.... I figured dh and I would cope - but we also knew there was a lot of people out there - family and friends and now amazing new friends who would support us.

I think if you really want to know and are worried then have an amnio. If that is what it would take to put your mind at ease.

I don't know everything there is to know about Down's syndrome - learning new things all the time - but if you have any worries or questions - feel free to contact me.

Thanks for that - really beautiful stories. She is truly gorgeous.......how old now?

I feel I'm making a big fuss when countless pple have had this and probably just got on with it once they've made whatever decision. I think after Thursday I've reached the end of the line and have to either just try and enjoy the rest of my pg or have the amnio.

she is almost 19 months old - attends mainstream nursery as I work full time.

It is hard at times - esp. for us when she was first born and we were waiting for heart surgery etc... that was the hardest thing I have ever had to do.

I do admire the fact that you want to find out and that if it does show up ds for example that you want to find out more about it all.

I know it is hard but see what Thursday brings and then make up your mind.

Have just caught up with this thread Lazyeye and just wanted to say that i dpn't have any advice to offer but wanted to let u know that i will have everything crossed for you on Thursday?

Of course i don't know how you feel as i decided to not have a nuchal or any of the additional tests carried out but i too have my 20 weeks scan on Thursday and am complete wreck panicing about what "might" be found - Finger crossed for you and just remember that whatever the outcome and whatever you decide, you will always get support here from mumsnetters x

Lazyeye - how could I have missed this threead - sorry you've been going through all this and wish I'd been around earlier for you.
Edisvold has responded to you though which is great and she has very kindly shared both our stories with you (thanks Edisvold).

Look this might not help you much - but I'd love to meet you, and bring Lottie if that might help, it might make the whole thing less scary for you???

Madgirl, who I'm meeting in a few weeks, put it very well here by the way.

Children who happen to born with Down's syndrome are perfectly normal and wonderful individuals. Charlotte was born with no heart problems and apart from receiving pysio and speech and lanugage support, which half the time I don't feel I need (!)there is nothing different about us as mother and daughter than the next person. Lottie and others like her who share the extra chromosome are just slowed down versions of you and me. There is nothing to be scared of, I promise you.

I can stand in front of you with my hand on my heart and swear to you that having Charlotte and having a child with special needs even, is the best thing that has happened to me. It brings you closer to everyone around you, you appreciate the smallest things and the smallest of achievments and you learn not to take things for granted. She has blessed my life with her presence and I wouldn't change a single thing about her. There may be moments that I feel slightly worried about the future, boyfriends, bullying etc, but show me a mother who doesn't worry about stuff and I'll show you a liar!

I just want to try and make you feel less scared sweetheart, I'm not trying to push my views on you. I just want you to know that I am a normal, down -to-earth 31 year old with the most amazing, fabulous child and nothing about DS scares me, no more than being responsible and loving and caring and wanting the best for your child as every mother on earth, no matter who the child and what they are like.

My sister was born a normal healthy, happy child and since 13 has bee virtually housebound due to OCD. They couldn't poick that up in a scan.
My step sister - wonderful child, turned into a slef-harming drug addict. They didn't pick that out in the scan. Do you get what I'm saying?

The offer to meet me and Lottie if you wish will remain open to you.
Feel free to email me off the boards if you like and to discuss anything you want. i'd like to be here for you if you need me to.

lots of love - Sara aka Thomcat xx

What a lovely lovely post.

I didn't have any tests in my last pregnancy and won't in my current one, what will be will be. IMO far far too many tests are offered which do little to allay fears and lots of women spend their pregnancies worrying unnecessarily.

Thank you so much for you beautiful post Thomcat.

D'you know, your post (and others yesterday) plus a lovely chat to another midwife (not my own) have made up my mind that unless they find something tomorrow which will cause this baby to suffer for whole of its life (and I'm not including Downs in that at all), then I'm not going to bother with the amnio. I know I couldn't terminate - I'm 22 weeks now. For the first time in weeks I feel like I can enjoy my pgncy again. This screening lark has a lot to answer for. I would advise anyone to have only the nuchal OR the bloods, but not both (and esp if you are getting on a bit). I wish someone had told me that.

Thomcat - I might well take you up on your offer, though I am in Newcastle!! I could travel. I think you are right about the fear element. I think my main concern was that first year when babies are so demanind anyway - how would I cope with my 2 plus a DS child? The m/w I spoke to yesterday reassured me that a DS child is no more demanding in anyway as a young baby. I feel like once I got over the 1st year, I could cope better.

Anyway, we will see what tomorrow brings & I'll let you all know next week.

I know I have seen this lots of times on other threads, but this is the first time I have asked for advice on a big issue for me, and I'm so grateful for all your help - you really have helped me to put in perspective.

Oh Lazyeye - i couldn't be happier. When I read that you can start enjoying your pregnancy again I kjust cried! It's so important that you enjoy your pregnancy and dson't worry about things you don't have to worry about, esp as you already have 2 children.

your midwife is so right in the fact that babies with Ds are just the same. in fact, just so you know, Lottie slept through the night, from midnight until 7/8 am. She just didn't really cry, at all. She breastfed beautifully and just cooed away and charmed everyone. cam e everywhere with us and never caused us a moments concern. A dream child, we were So lucky.

What a shame you're so far away. well we won't rule it out.

Either way lets keep in touch and ask me anything you want at anytime.

I'm just so pleased you feel better about things Lazyeye, I'm all emotional abpout it! Funny how Mumsnet can make you feel so close to a complete stanger!!!

Lots of love and I look forward to chatting to you more, about this topic and anything else at all! xxxxx

What a lovely thread! SO pleased you can enjoy your pgcy now Lazyeye, I have been thinking about you. I have also foregone all tests. Thomcat I do hope your invitation would be open to any of us who found out we were having a D/S baby as I personally would find it invaluable to meet first hand a Mum already in the position. Love to you all.xxxx

Lazyeye I?ve been following your thread and I haven?t felt as if I could add anything of real value to the fantastic advice given by others here, but just wanted to say how very pleased I was to read your last post; my predicament was fairly similar I think in terms of scans, risks, amnios, and once I came to the realisation that fear was my issue, that the ?maths? was the thing muddling my feelings, and the fact that I would find it so so hard to terminate so late I was so much happier, overwhelmingly so. Enjoy the rest of the pregnancy and GOOD LUCK tomorrow MG.

You are so right MG - I had to separate out the fear of having a DS child from everything else. I think I had been saying in my mind that I need the amnio to "be prepared" but be prepared for what? I suppose I would know for that moment when they place the baby on your tummy, but really thats only a moment - its the rest of its life that counts.

I'm happy with my decision now .

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Hi Quackers - my offer is absolutley open to anyone, anytime. I menn that sincerely.

I'm just so happy that Lazyeye is feeling the way she is now as opposed to a week or so ago.

Well done once again Mumsnet.

so glad to hear you are enjoying your pregnancy. That is the most important thing. Funnily something TC said was said to me when we first found out about dd's heart condition... if my child had an accident or became seriously ill - would I hand her back.. no way. THis is your baby.. enjoy the feeling of that little life.

In spite of dd's heart condition - day to day she has been so easy to care for - slept through from the moment she came home from hospital at 3 weeks old, took the bottle with a vengeance after heart surgery, full of beans and very very cheeky. Like TC - I am just her mum and while we do physio and ot things - we do those while we play. She was always a very content little baby - not demanding in anyway. It was a shock when she developed Chicken pox and had colic for a weekend - boy we knew we were alive with no sleep.... and a very grizzly little girl!!

When we had the heart condition confirmed by fetal cardiac scan they offered me an amnio. I was determined not to have one no matter what and perpared myself for a fight. The cardiologist agreed when I said there was no point as it would not change the outcome so there is no point in putting myself and dd through it.

It is a shame you are in Newcastle but I am sure if you contacted the DSA they too would be able to put you in contact with local groups of parents who would be more than happy to chat to you about having a child with Down's syndrome. We were very lucky in that my dh's boss had a daughter with ds and spent time chatting with dh and me. I am more than happy too for you to meet dd too ( and we are east of London) although we will not be here after June

Like some others I was determined to have control - I got annoyed with the amount of intervention offered and in some cases forced on women during pregnancy. I had very little invasive testing - only blood test was to check rubella antibodies.

I just wanted to enjoy being pregnant and enjoy feeling that little life inside of me.

Enjoy

I just re read my post and implied that your baby will be born with d/s that is not what I meant just that like TC the offer is open.... iykwim

Lazyeye - was thinking of you yesterday - hope all went well....

Hi Lazyeye, just checking in on you, let us know how it's going if you feel like it.
Thinking of you, lve TC xx

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