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Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

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Original poster

V bad odds for Edwards and Patau's syndrome... Scared.

109 replies

bayswatersophie · 21/03/2016 14:27

Here's the background...I am pregnant at 40 with my third baby. The other two pregnancies were plain sailing all the way, and two beautiful girls, no issues other than difficulties in getting pregnant in the first place. I was subsequently told by my doctor that I would not be able to get pregnant with another child and had made my peace with that. So I was beyond surprised to find myself 8 weeks pregnant this January... Unlike the other two pregnancies my husband and I felt very mixed emotions at first about this one... We had mentally moved on from the idea of a bigger family and were not thrilled at first. However, after a couple of weeks of living with the news we were happy and excited about this unexpected gift of a third baby. The 12 week scan was lovely and normal, good NT. I went ahead with the blood tests for the triple test and didn't think anything of it. It went down hill from there.... The results were mislaid between the lab and the midwife and when she re requested them to be sent after me pressuring her to get them (took a whole month) it turns out that the hormone levels were extremely low and that an urgent scan was recommended as they suspected a miscarriage or Edwards/ Patau's. I had the scan last Saturday and the doctor was pretty reassuring. Apparently no visible problems other than the fact that the baby is very small for term and they spotted one cyst. I felt reassured but booked for the Harmony blood test just to be sure. At my appointment today they took one look at the bloods and the scan and told me that I should have the amnio straight away as results would come in 48 hours, rather than wait for the blood test which takes 10 days. She said she was very concerned about the combination of my age/'retarded growth ' / the cyst and the bloods. She wouldn't give me a statistical chance for either syndrome as I live in France and apparently they don't give out the odds other than for Down's Syndrome (which is v low risk due to good NT and low hormone result) but her reaction made me feel they can't be good...The next thing I knew I was signing consent forms and lying on the couch waiting for the needle. Now I am at home going out of my mind with worry, googling and thinking the worst. I feel irrationally that somehow this is my fault and my punishment for not 'wanting' this baby initially...
Has anyone experienced anything similar and did it turn out ok? The next two days of waiting feel like torture....

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Original poster

bayswatersophie · 30/03/2016 08:51

Thank you, I can't imagine what it was like for you to do it alone. My husband will be with me, we have organized child care for our two little girls. I am so scared, and the waiting is just awful

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AliBingo · 30/03/2016 09:48

For me there had been such a hideous build up that it was a relief when the termination was over, I felt devastated emotionally but at least I could start trying to come to terms with/get over what happened. Now the whole thing almost feels like a bad dream, but sometimes I ache for the little boy I lost.

I hope they don't keep you waiting around too long today, and I'm glad you'll have DH with you. Mine was on a Saturday so we couldn't get any childcare.

Oh try and have some magazines or something to do yo try and distract you as there's likely to be a wait until anything actually happens. Not that you'll feel like reading but better than staring into space. x

Original poster

bayswatersophie · 30/03/2016 10:30

I just walked out of the session with the hospital pyschologist. So unbelievably un helpful. When I said I felt traumatised by what was happening she started nit picking my choice of words in French and telling me it was not technically trauma I was feeling. I just want to see the consultant, take the drugs and get out of here

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AliBingo · 30/03/2016 11:31

I bet she's never been through it. It's definitely traumatic.

HandbagHelper · 30/03/2016 12:58

My thoughts are with you having been in a similar situation sadly. I am so sorry this is happening to you and on top of that the support from the medical professionals sounds like it is not helpful! Sometimes there are gems -a kind nurse or understanding Doctor that make up for others. I hope more of those cross your path. ( I had a doctor call to apologise after my concerns were brushed off at initial diagnosis stage and turned out to be very much warranted - I was very grateful that she did that).

Be kind to yourself and there is no right or wrong way to process this as you move forward. Thinking of you.

Original poster

bayswatersophie · 30/03/2016 13:08

Thank you for your kind messages. I think only those who have gone through it can truly understand how hard it is. After that awful ´counsellor' I saw the consultant and she was very kind and then the midwife who let me just cry and told me her story of losing a baby at 8 months 20 years ago. It was a relief to be with people who could empathise

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KittyandTeal · 30/03/2016 13:47

What you are feeling IS trauma. I've tried not to use the word until me counsellor suggested it and it all fit.

I'm glad some of the other medical professionals are being a bit better.

I always find it strangely soothing to be around others that have been through similar, it's like you don't need to explain everything.

Have you taken the first set of pills? We're all here for you. Try to be kind to yourself.

Original poster

bayswatersophie · 30/03/2016 13:58

Yes, exactly that, not having to explain and having others just know and understand what you are going through makes me feel a bit better and that I don't have to justify the sadness and anger. It was like that woman was questioning whether what I feel was valid or not. I told her I was uncomfortable with her reaction and left the session early. I took the first pills this morning and have just locked myself away in the bedroom. My kids want me to play with them but I can't quite find it in me...

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BustingOut · 30/03/2016 14:04

Finding the right words to use is difficult here. it seems trite to wish you all the best but I didn't want to read and not let you know that I am thinking about you and hope that you find a way to cope with all this. And you don't have to validate what you are going through to anyone.

Original poster

bayswatersophie · 30/03/2016 14:06

Thank you, not trite, very very kind. It is comforting that you are all with me

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dontcryitsonlyajoke · 30/03/2016 14:14

I too don't really want to wish you all the best because it does sound wrong, but I do wish the best for you - that the next few days, weeks and months are bearable and that you find peace. You are going through such a hard thing and I am thinking of you and your DH and your girls

KittyandTeal · 30/03/2016 14:21

Do you have something to distract you or a plan for tmrw? I found that 'middle' day between the first pill and going in to give birth hard. We took dd1 to the aquarium. Very weird day.

Lock yourself away and do whatever you need to to get by.

I don't know if you have a sands group equivalent in France but I've just got in contact with ours and it's lovely talking to people who understand. I even had a joke and a laugh at some of the responses we've both had when we tell people 'no more babies'.

I know it sounds strange but I actually felt a bit better after I'd given birth. I felt like I could get on and start grieving rather than being in limbo and waiting for 'the bad thing' to happen iyswim.

Original poster

bayswatersophie · 30/03/2016 14:33

No idea about tomorrow. The girls have play group/school in the morning and the older one school in the afternoon. I think good for them to keep to their routine. As for me, I don't know.... I don't think strange to feel better after giving birth. I completely get that. The anticipation of it looming in front of me is so hard and the weird ´normality' of life going on as usual and the baby still there and kicking me is really really surreal and difficult

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KittyandTeal · 30/03/2016 14:37

Yeah keeping the girls routine is a good idea. We did the same with dd1. They feel much safer with routine.

The anticipation is sometimes worse I think.

The going back to normality is very strange. I found things very odd for quite a while and stayed at home generally for a good few weeks. It sounds cliche and maybe a bit early to be thinking about but you will find a new normal.

Original poster

bayswatersophie · 30/03/2016 17:32

I just told the girls that the baby died and that the doctor was going to help me take her away to heaven. Lots of tears and disappointment especially from DD1, but they are ok now. I feel like a weight has lifted now that they know why mummy is sad but that we are all going to be ok. One more step forward...

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KittyandTeal · 30/03/2016 17:40

That's a shitty conversation to have with them. I hated telling dd1 but it's better when they know why you're so sad.

If it helps I just bought 'we were going to have a baby but we had an angel instead'. I don't know how old your girls are but my Dd is 3 and she understands it, it's a bit American but it is now her favourite book. It deals with being excited that the baby is coming and the sadnes afterwards. It's very simple but it has been really helpful

evs34 · 30/03/2016 17:54

I am so sorry that you are going through this. I had a top at 14 weeks in November for patau syndrome. The waiting was the awful bit and on the day my body did what it had to. Great sadness after but it gets easier everyday. We had prints taken which I am glad for. Telling the children 6 and 4 was hard. They were amazing and we do still talk about the baby. We told them that it is now in heaven as a star- this helped them. I am now pregnant again and I have felt more grief in the last few weeks than at the time which I wasn't prepared for.
You have to take time, grieve in your own way and at your own pace and I suppose not let it overshadow the blessings you already have. I have to remind myself of this! I wish you the best and hope you find the strength that you need xx

Original poster

bayswatersophie · 30/03/2016 18:33

Kitty thank you. They are nearly five and three so the book sounds good. It's a good idea to help them process it as I am sure they will come back with more questions.
Evs34 I am so happy for you that you are pregnant again and sad for you that you are grieving through it. You are right that we are blessed with the children we have. I hope all goes smoothly for you with this pregnancy xxx

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KittyandTeal · 30/03/2016 18:40

Yes dd1 has asked lots of questions. My 'lines' have been 'the babies died because their bodies were broken and they didn't grow properly' lots and lots of 'no the baby isn't coming back into mummy's tummy'. She convinced herself for a day that I didn't have a baby in my tummy but that it was an angel now.

I've had to talk to her lots about it and she still asks lots. She makes families with a mummy, daddy, girl and baby lots atm and has been drawing lots of pictures of us and her with the 2 babies so she's obviously processing it in her own little way.

Original poster

bayswatersophie · 30/03/2016 18:46

Yes, I said broken too but it sort of back fired as they kept trying to kiss my tummy better to repair the baby. So we have spoken a lot about death. It is sinking in slowly....

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KittyandTeal · 30/03/2016 19:09

Yeah my Dd started talking about her Nanas broken arm so I had to explain that they were more broken that that which is why we talked about growing. Luckily (although not so much atm as it tough) she has seen my sil go from little to huge with a baby so I could say that our baby wasn't growing like auntie vs is. That helped a bit.

I've found its just repeating the same stuff over and over. She still rambles on about people dying so I have to kind of correct her. And she tried to generalise so we have lots of conversations about 'not all babies die'.

Strangely having to talk so frankly with her has helped me a bit too.

KittyandTeal · 30/03/2016 19:17

I've just been thinking about this. I got really wound up in the first week or so about if we were talking to Dd 'right' I got into a right tizz.

My counsellor said to me 'if you are being honest and saying it with love then you are doing the right thing for her'. She also said this is not your only chance to explain it, you will explain it in more detail and in depth as she gets older and has more understanding, it is something you will be talking about for the rest of your lives. That really helped me calm down about it all.

Original poster

bayswatersophie · 30/03/2016 22:58

I rang Arc just before and asked their advice on what to say. It was very similar advice to what you told me, keeping it simple but not flinching from words like 'sad' and 'dead'. It helped me to have a sort of simple script and for now I think I did the best I could in explaining. They seemed to take it ok but we returned to it several times this evening and into the night. I anticipate this continuing for a long time and that's ok. It is good advice to know that you can come back to it and continue to explain, thank you.
DD1 asked to make a little grave in the garden and to decorate the stone with stickers, to plant a flower and light a candle. I think we will do it for her as she seems to need a ritual to make it final and real. I have written a long note to her teacher so tomorrow the message is consistent if she speaks about it. You are right, breaking it down again and again into simple language is quite therapeutic and it feels good to focus on helping them rather than dwelling too much on myself

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KittyandTeal · 31/03/2016 09:15

That's a great idea, arc are brilliant.

Dds preschool were amazing and are using exactly the same language as us.

It's lovely that your eldest wants to do that. I think they find their own ways of processing it and dealing with it. My Dd has been drawing lots of pictures.

I hope today is ok and not too anxious for you xx

Original poster

bayswatersophie · 31/03/2016 09:39

To be honest I feel wrung out. I hardly slept as the baby kicked a lot in the night and so my mind wouldn't switch off. Taking it hour by hour today

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