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Antenatal tests

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Original poster

High Chance of Downs from Quad Test

60 replies

Monty83 · 04/12/2019 15:51

Hi All,

We had a phone call from the Fetal Medicine Centre today to say that we have a 1 in 5 chance of our baby having Down syndrome. I feel so upset and my head is in a complete spin. We can not decide whether to have the Harmony Test or the Amnio done. I am 16 weeks so I'm worried that time is against us. We are very undecided as to what we would do if our child had Downs Syndrome. There is a part of me that desperately would want to keep our baby and another that doesn't know if we could manage (my husband has a cousin with Downs and so we have had some insight into what it can be like). How do you even begin to make a decision about these things. I'm so conflicted about everything. It's our DS birthday tomorrow and his party on Saturday. I dont know how I'm going to get through it all.

I'm not sure why I'm posting really as I know that the answer can only come from us but I just dont know what to do...

OP posts:
Nanmumandmidwife · 09/12/2019 20:17

@Monty83 and @AndddddHerewegoagain please do get in touch if I can help in any way. It is fine to PM if you want to talk privately.These issues are very specialist and outside the remit/knowledge base of most community midwives. I am concerned to hear that MW told Andherewegoagain that result would be affected by your son's issues. That is simply incorrect unless it was one of the relevant trisomies (Downs/Edwards or Patau's).
NIPT is pretty accurate but it is important to remember that it is still a screening test. It has more false positives than false negatives.
@Monty83 where did you have your amnio done? Anyone able to do an amnio should have the skills to look carefully for anything unusual on scan. To my mind this is a crucial part of that consultation. You may want to consider a second opinion scan through a tertiary referral centre.
Two useful website in addition to the Downs Syndrome Association already mentioned www.walkingwithyou.org.uk and positiveaboutdownsyndrome.co.uk/

JoyceJames · 11/12/2019 08:27

I really hope things turn out well for you.

Original poster
Monty83 · 11/12/2019 11:22

Sat here in floods of tears because our amnio results are back and we've tested positive for Downs. Please know that I do not wish to be insensitive or hurtful to anyone (I swear that is not my intention at all) but right now I feel like my world has been shattered and my heart broke into a million pieces. @AndddddHerewegoagain I hope and pray you have a different outcome to us. Thinking of you xx

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AndddddHerewegoagain · 11/12/2019 12:06

So sorry to hear this @Monty83 im sure everyone understands you don't mean to be insensitive. I felt broken after our diagnosis with our first and that's not even on the same scale as this.
Im still awaiting my test results. Hoping they come in the next couple of days
Sending you lots of love. Xxxx

Wonkydonkey44 · 11/12/2019 13:27

Please contact the Down syndrome association they are wonderful . Sending lots of love xxx

Nanmumandmidwife · 11/12/2019 13:39

@Monty83 I am so sorry to hear this Please feel free to get in touch if you want to talk xx

AlexanderHalexander · 11/12/2019 14:48

sorry to here that Monty.

Take a couple of day to get your head around it.

Remember, there is no right choice, just the right choice for you. Talk to your partner and try to work out whether you'd like to continue with the pregnancy, and what support you can access to help, or whether you feel TFMR is the right choice for you, and what support you can access to help.

Someone very close to me went through this. She chose to TFMR, and has no regrets, but still thinks of it every day. I also know people who chose to continue the pregnancy who have no regrets, so I know of it working out well with either option.

Flowers
SylvanianFrenemies · 11/12/2019 21:14

So sorry to hear this news. It is just horrible.

Remember, there is no wrong decision.

As indicated earlier. I had a tfmr in similar circumstances. I don't regret that choice. Please feel free to pm. Be kind to yourself.

SueDoeName · 13/12/2019 19:35

monty

get in touch with ARC (antenatal results and choices) I feel for you I really do - I was in this position 3 years ago.

after much research, I didn't continue but it absolutely broke my heart. ithink of my angel girl every day .

ARC sweetheart - phone them xxxxxxxxxxx

SueDoeName · 13/12/2019 19:38

ARC are totally impartial - they'll just help you make your mind up whats next

SueDoeName · 13/12/2019 19:43

darling goole ARC - antenatal results and choices . I cant seem to link. they offer counselling and advice that's totally impartial. xx

Gemamy1984 · 14/12/2019 18:18

@Monty83 just wanting to check in and see how you are, been thinking about you xx

AiryFairyMum · 15/12/2019 01:19

Sending lots of love.

Original poster
Monty83 · 15/12/2019 07:06

I go into hospital today. My heart aches and I honestly dont know how I'm going to get through it. Thank you so much everyone for everything you have said. You've been such a huge support. I just wish with every ounce of my body that things could be different xx

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Nanmumandmidwife · 15/12/2019 07:16

Sending you love as you face such a heartbreaking experience. This is clearly a decision you have made carefully and based on love, and has taken great courage.
I hope the process goes smoothly for you & you are able to say a gentle goodbye to your little one xx

BlackSwanGreen · 15/12/2019 07:21

So sorry to read this, what a very sad time for you. I hope everything goes smoothly today. FWIW I would make the same decision as you Flowers

AndddddHerewegoagain · 15/12/2019 07:32

Sending you lots of love @Monty83. I really hope today goes smoothly as possible for you and you have lots of support after. We are all here to chat if you need us xx

lookingatthemoon · 15/12/2019 07:50

Sending lots of love and strength for today @Monty83

olderthanilookapparently · 15/12/2019 08:01

Sending you lots of love and my thoughts are with you

Gemamy1984 · 15/12/2019 08:48

Sending you love for today @Monty83. We're here if you want to talk whenever. My heart is breaking for you xxx

Original poster
Monty83 · 15/12/2019 11:17

Thank you. The kindness from strangers has touched my heart xx

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Original poster
Monty83 · 15/12/2019 11:18

@AndddddHerewegoagain I hope with all my heart that your results come back okay. I wouldn't wish this on anyone. Please let me know how you get on xx

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Gemamy1984 · 15/12/2019 16:02

@Monty83 it's amazing how strangers can show such compassion. Hope today went as well as it possibly could. Xxx

SueDoeName · 15/12/2019 16:28

Monty

I did the same , 3 years ago now but time does heal. 💐 x

Original poster
Monty83 · 15/12/2019 16:28

Just had to post as I'm at a loss of what to do with myself. Got ready to leave at 11:30 then get a phone call to say that they have staff shortages due to D&V so we couldn't go in just yet. They said that if we haven't heard from them by 6 then to ring up but they are hoping there will be more staff on tonight (not guaranteed though). So God knows when I'm going in. Also don't know whether it would be better to go in tonight (thinking I might be more sleepy so will find it easier to rest in between and I'm guessing they will be short tomorrow too) or tomorrow (as I'm worried that I wont have as much energy to cope with it all). No-ones fault but adding more uncertainty and stress in an already difficult time xx

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