Bad news from NIPT

(45 Posts)
natb88 Mon 24-Oct-16 19:39:49

Well today I got the call which I really wasn't expecting. Unfortunately after my NIPT test it looks pretty certain that the baby I am carrying has Down syndrome.

Shocked is an understatement. My NHS risk was only 1 in 140 but it looks like I'm the 2. The detailed scan the private clinic did showed no soft markers either so even more of a shock.

I now have to go for the invasive testing tomorrow to confirm. Preparing myself to make a horrible decision I never thought I'd have to make. Just looking for support from anyone who has been through similar, with no judgement around a possible decision to Tfmr please.

natb88 Mon 24-Oct-16 19:40:27

Sorry meant to say looks like I'm the 1, not 2

stuckinny Mon 24-Oct-16 19:41:17

No advice to give, but sending you hugs. flowers

Slightlyperturbedowlagain Mon 24-Oct-16 19:42:56

None from me either, but flowers

Rubberduck2 Mon 24-Oct-16 19:43:17

No advice here either I'm afraid, however hand holding with you every step of the way.

flowers

KittyandTeal Mon 24-Oct-16 20:03:05

I'm sorry you have had bad news.

I have experience of a tfmr after 20 weeks and a mmc (with an induced, medical management which is the same process of a pre 16 week tfmr) I am happy to answer any questions or give you an outline of what happens if that might help.

Our tfmr was for edwards so I don't have experience of Down's syndrome. My advice would be to research as much as possible over the next few days, there are lots of groups out there but personally I found them very hard. I joined a T18 fb group where almost everyone had carried to term, it made me feel a failure to our dd2.

ARC are a wonderful charity that can give you impartial advice and point you in the direction of people who have experience of a diagnosis of T21.

It is a really tough road, the waiting for results was some of the worst part for me.

Do not let yourself be swayed one way or another by other people. You are the ones who will either need to live with the decision or bring up a baby with Down's syndrome. Ask as many questions as you need to of medical professionals.

natb88 Mon 24-Oct-16 20:36:37

Thank you everyone.

Cuddled my 3 year old extra hard tonight.

Kitty thank you for your detailed response. Not keen on facebook groups either but I think I will definitely give ARC a call

curliegirlie Tue 25-Oct-16 17:45:32

Good luck, whatever you decide. I found out 5 hours after she was born that my daughter has Down's Syndrome. It completely knocked us for six as my NT/combined bloods had been 1 in 1700, but I was that one. 14 months on and my DD is an amazing, smily, cheeky little girl and doing so well - she has no heart or bowel problems and is keeping up with her NCT mates pretty well. She recently started commando crawling and is into everything! We are so proud of her. The Down's Syndrome Association is brilliant- do have a look at their website and new parent's guide. Also, I know you said no Facebook groups, but the Don't Be Sorry page is excellent - a positive but honest blog by the mum of a 4 year old with DS called Oscar. It doesn't deny the challenges but is very uplifting.

beansbananas Wed 26-Oct-16 16:54:56

I went through this myself in may and made the devastating decision to terminate the pregnancy at 16 weeks in May this year. I can honestly say it's the hardest thing I have ever experienced, but I do not regret my decision. I chose to use an abortion clinic as I wanted to be asleep during the procedure and they could not do this in my hospital at such a late stage in the pregnancy. Don't be afraid to consider all options and please do call ARC. My husband and I both cried on the phone when we spoke to them and they were extremely supportive and helpful. We chose not to tell anyone what happened and simply said we had lost the baby, due to religious family members who would not understand our decision. But I'm sure if you keep the baby you will be wonderful parents and will overcome the challenges ahead. Whatever you decide, make sure you and your partner are both in agreement as you will need each other more than ever to get through it. I'm so sorry you are in this position, but you will be ok. I am now 12 weeks pregnant again and am due to have my scan on Monday. Keeping my fingers crossed it is a healthy baby. You will go on to have a beautiful family either with this child or another. Good luck.

natb88 Thu 27-Oct-16 11:47:22

Beansbananas thank you so much for your post, it is good to hear from someone else who has been through it.

Well I had a CVS on Tuesday as obviously the NHS need to do that to confirm. Just a really uncomfortable experience. Went in the toilet after and just cried.

We have made the decision, not only for us, but for the future of our three year old son as well as this baby. We don't believe we are emotionally strong enough to have the baby and have decided to terminate. Just sat now waiting for official results which will be any minute now before they can start the process

natb88 Thu 27-Oct-16 11:49:19

Good luck with your current pregnancy, fingers crossed for a healthy baby for you xx

KittyandTeal Thu 27-Oct-16 12:22:22

I'm so sorry nat.

Have they spoken to you about your options re the termination. You may be eligible for a surgical procedure if you would prefer.

I hope the results are quick and the termination is a quick and pain free as possible

SailingThroughTime Thu 27-Oct-16 12:30:54

I had an amnio 20 odd years ago. It came back clear of DSyndrome but it was a horrible situation. It's so easy to say what you think you would do but until you're in that situation yourself...
I hope you get the very best possible care and flowers for you.

stuckinny Thu 27-Oct-16 13:02:21

Thinking of you and sending hugs. flowersflowers

natb88 Thu 27-Oct-16 13:57:52

We have results now and it is confirmed. Just feel a bit like I'm playing out someone else's life at the minute, don't they no it's quite sunk in.

The hospital have been really nice but the only option they have given me is for the non surgical termination (as I guess that's all they can offer). How do I find out about the surgical option?

minipie Thu 27-Oct-16 14:08:43

I would suggest a call with BPAS or Marie Stopes to talk you through the termination options. Best wishes

KittyandTeal Thu 27-Oct-16 14:13:50

I'm so sorry, even though you knew it was coming until you get that definitive result there's always a bit of your heart that hopes. I remember that crushing phone call. So awful.

I think I felt like it was all unreal for months afterwards to be honest.

In terms of surgical most NHS doctors can't do them after 12 weeks I think but you can have them up to 16 weeks. Usually the hospital can refer you to a private clinic (but it's NHS funded termination) arc will be able to give more advice.

Do you have a screening or bereavement midwife at the hospital? They should be able to sort it for you.

Having said that I have had a mmc medically managed at 14 weeks. The process is pretty much the same. All in all it was ok. I opted for the labour ward as that's where is felt comfortable after loosing dd2 as well. You can be on the gyne ward, usually in a private ward, so you don't have to come across pregnant women or babies.

I opted to see dd2 and ds afterwards. Dd2 was 22 weeks and so looked like a tiny sleeping baby. Ds was much smaller and loooked very much like a foetus rather than an actual baby. I'm still glad we saw him. They took prints and photos and I left him with the comforter we'd bought him. We chose to have the hospital organise a service which we attended and we got ashes back after his cremation. We also did the same for dd2. I'm telling you about my experience with ds as although he died rather than tfmr he was a closer gestation to you. We did the same in terms of prints, photos and a service for dd2 as well.

Both of them have plaques in our local sands garden and their ashes are together in the baby garden there.

Please don't feel that because you are having a tfmr you cannot grieve your baby or behave in the same way you would if they were stillborn.

Saying that, none of those options might be what you want. Choose whatever will help you get through this. I just know that lots of women who go through tfmr feel they shouldn't do the whole prints and photos stuff.

beansbananas Thu 27-Oct-16 14:20:25

Yes I agree with the advice above. I went to bpas as they had more availability and I have to say they treated me extremely well throughout the process. It was my first pregnancy and I was adamant I didn't want to be awake during the termination. The hospital didn't support that so I didn't want to be treated by them. If you would like more information about the process then let me know. Afterwards I felt uncomfortable and emotionally empty, but I cried most of my tears while waiting to have the procedure. My husband however cried as soon as we got home, as he had stayed strong for me at the clinic. It's emotional and difficult but if like me you are sure of your decision, then you will be ok. But take time to cry and mourn your loss, and take time for yourselves as a couple.

AliBingo Sat 29-Oct-16 11:09:06

I had tfmr for t21 at 16 weeks back in 2013.

Had medical, really wanted surgical but NHS couldn't/wouldn't and I had a bad experience with bpas.

NHS were really good with the medical termination and it was ok really, so no regrets. Emotionally a different story of course, worst thing I've ever been through, I felt guilty even though I knew it was the right decision.

Have had 2 more kids since but still feel the loss.

natb88 Sat 29-Oct-16 13:12:51

Thanks Ali,

Can I ask if you found out if it was a boy or a girl? We've been saying we don't want to know to try and make it easier to get through somehow but I'm now not so sure.

Am doing medical termination as the hospital have been so good with me. Had the tablet yesterday, back in at 9 in the morning for the rest....

AliBingo Sat 29-Oct-16 15:53:47

I didn't even think to find out at the time, and then when I had tests when 12 weeks pregnant with DS I really wanted to know as it seemed hard not knowing, made it less real but in a bad way, anyway luckily they had my file and the CVS results showed it was a boy I'd lost too. It might be possible for you to leave it for now and find
out later. It helps me to know even though we didn't name him or anything.

Good luck tomorrow x

KittyandTeal Sat 29-Oct-16 16:46:41

With dd2 we already knew as we chose to find out at our 19 week scan.

With ds we chose to find out with our harmony results.

My feeling was I wanted to know so I could name them (we'd already chosen a boy and girls name which we kept) and it was easier to refer to them as babies/people.

My dd1 knows and refers to her sister and brother by name, it helps her too.

beansbananas Sun 30-Oct-16 05:47:17

I just wanted to wish you good luck for today. I hope it all goes smoothly. My husband and I chose not to find out the sex, as we felt we didn't want to bond any more with the baby than we already had. Sometimes when I think about the baby now, I do wish I had found out... particularly now I'm pregnant again and can't help but draw comparisons about how I'm feeling. But I think that overall it was the right thing for us and helped us to move on, as we hadn't known if it was a boy or a girl and therefore did not have a name. But I guess that's a very personal decision that only you and your husband can make. It doesn't make me think about the lost baby any less and certainly the grief was and is still overwhelming at times. But I guess it did also help my husband and I all the same by not knowing. Anyway I really do wish you both all the best and I promise that everyday it will get a bit easier.

KittyandTeal Sun 30-Oct-16 07:29:27

Good luck today. I hope it's as easy and pain free as possible.

Be kind to yourself and let the hospital staff look after you flowers

natb88 Sun 30-Oct-16 07:45:50

Thank you everyone

I think we have decided not to find out the sex due to similar reasons beansbananas has explained above. But who knows how I will feel when it happens.

My little boy kissed the baby bye earlier and it was the saddest thing ever, bless him

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