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High Risk for Down Syndrome/Edwards-Positive Stories needed please!

213 replies

MumOfMiracles · 20/03/2021 09:03

Hi lovely Mummy's, really need encouragement today, this is my 3rd pregnancy and after a really wonderful 12 week scan seeing my sweet baby. Got a call 2 days later to say I am high risk for Downs (1 in 143 chance) and Edward's (1 in 243) For my last 2 it was 1 in over a thousand so this really came as a shock! Not only that I have low Pappa-A so am taking aspirin every night to support my placenta. Keeping all this quiet from friends and family as I don't want the pressure of keeping them posted and dealing with their reactions to the news. So feeling very overwhelmed right now emotionally and have opted to take the Iona test on Monday (NHS version of Harmony) to get a better idea of what my chances really are.

Positive stories or any words of comfort or encouragement would mean so much right now.

Thank you! xx

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MumOfMiracles · 22/03/2021 18:22

Thank you Sarah! Will have to keep myself busy as much as possible. If only there was a fast forward button?! 😘 Definitely a test in patience and faith. xx

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MumOfMiracles · 22/03/2021 18:24

Not going to enjoy the waiting part I must say Mummy20, love my little one so much and just want everything to be ok for him or her. All there is to do now is pray and wait. xx

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MumOfMiracles · 22/03/2021 18:25

I was told if I am really lucky will get results end of day Friday, more likely though to be Monday or Tuesday. x

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Mummy2O · 22/03/2021 18:47

I will keep everything crossed for you this week. Check in if you need to talk. xx

MumOfMiracles · 22/03/2021 19:29

Thank you! Appreciate that. xx

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MumOfMiracles · 25/03/2021 12:57

Hi ladies, counting down the days right now, finding I am thinking of it more as the date for results gets closer. Anyone else find that? Thinking maybe journaling my feelings might help, will give it a go later. Hope you are all keeping well. xx

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Mummy2O · 25/03/2021 13:07

That is definitely normal. How are you sleeping? I found myself to be very restless during the wait. I just couldn't concentrate on much either.

Stay strong. x

SarahD19 · 25/03/2021 13:15

@MumOfMiracles I found the whole situation pretty exhausting. It was 6 months of ongoing tests, complications and monitoring for me. I reached a point of just having to accept it wasn’t in my control and trying to enjoy the pregnancy, whatever that would bring. I figured my stress probably wouldn’t change the outcome and told myself that over and over. It’s really tough but am around if it helps to PM xx

MumOfMiracles · 25/03/2021 13:28

Thank you so much both! Sleeping like a log thankfully Mummy 20! Wow Sarah, thank you for sharing with me, you sound much stronger for going through all that and so appreciate your heart to be there for me as I wait. My last pregnancy appeared normal all the way through, nothing flagged up at any point but went through a lot last year with my beautiful boy after he was born, was between NICU and TCW for 34 days I total, was severely jaundice and needed a ng tube to feed. Was diagnosed with hypotonia (floppy baby syndrome) but with a lot of prayer, physio and love and encouragement the hypotonia is now resolved! Thank God for our miracle and for his Big Sis who came after 8 years of infertility, failed IVF and 2 early losses. They are both doing amazing! Had blood test and consults for my Son for months on end and he ended up being diagnosed with a ectopic pituitary gland which isn't affecting him so far which is brilliant. Would just mean hormone therapy later down the road if he needs it. So I just need to dig deep and believe that we have been given this precious baby for a reason too! I don't know what the results will be but I do know miracles happen and our little one is already so loved. xx

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MumOfMiracles · 25/03/2021 13:38

Really helps to be able to reach out too, to Mums who can relate. I so appreciate the kind words x

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MumOfMiracles · 25/03/2021 17:10

Praying for this sweet child of mine, my 12 week scan pic. 🥰 Will update with results next week. xx

High Risk for Down Syndrome/Edwards-Positive Stories needed please!
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SarahD19 · 25/03/2021 17:37

This is beautiful 🤩 Really hope you’re ok. It is so hard to focus on anything else during a time like this. I’m praying all goes well with your results. Being in limbo can be horrible. I think I took for granted during my first pregnancy that I was low risk for everything and all the tests were fine looking back xx

MumOfMiracles · 25/03/2021 18:09

I can so relate to that! I took it for granted too but never would again. xx

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Mummy2O · 25/03/2021 18:10

That is a beautiful scan picture @MumOfMiracles. I hope everything goes well for you. x

MumOfMiracles · 25/03/2021 18:14

Thank you so much both of you. Will update soon as I get results, hopeful it will be Monday or Tuesday. xx

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summerhillgang · 25/03/2021 22:37

Hi there, can I join? I just got the dreaded phone call today that my baby is high risk for Downs, 1:150. Very low risk for Edwards and Patau.

My NT was 1.7mm, Papp-a was 0.64 MOM and HCG 1.72. The NHS midwife said nothing was out of the ordinary with my results but that my age when I give birth was the main factor, I'll be 39.

I couldn't face the invasive procedures so opted for NIPT, which my midwife came over and took sample for this afternoon.

It's going to be a stressful few days. We decided we will continue with pregnancy if it's positive, so just trying to get my head around it all. Spent most of today bursting out crying 😢

Mummy2O · 25/03/2021 23:05

@summerhillgang I am sorry you are going through this. It is such a stressful and worrying process to go through. Have they given you an indication of how long you will have to wait?
Your age probably is a factor here. I'm 38 and I know it has bumped up my risk factors. You NT is well within the normal limits, so hopefully that is a good indicator.

summerhillgang · 26/03/2021 07:33

Thanks @Mummy2O. I think it takes a week, so maybe we'll know before the Easter break.

Yes definitely the age factor but also that Papp-a is slightly low and hcg slightly high. My mid wife said she has looked at thousands of these and normally if there's trisomy it would be more extreme levels of those hormones plus an elevated NT measurement. Likewise you could have all normal levels and be low risk and the baby has Trisomy.

She also reassured me around the age factor. The data they use to predict likelihood is from 2003 and 20 years later we have more mothers in their late 30s and 40s giving birth to healthy babies and actually the occurrence of Trisomy in that data is way off the actual number of babies diagnosed.

I think if I am blessed to have another I will have the NIPT as early as possible so I can weather this combined test experience a little better x

MumOfMiracles · 26/03/2021 07:42

Sorry to hear you got the call @summerhillgang, I know what a shock it feels to get it and the term High Risk can spark all sorts of worries. I totally agree with @Mummy2O though. Age sounds the biggest factor in your results so really hopeful for you that all will be well. 💕 I know how hard the wait feels, or all do! So know you are not alone in that. Should have my news Monday or Tuesday next week, so in the waiting with you lovely. Just hold on to whatever good you can find in your results so far and will pray we both receive the news we are hoping for. Xx

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MumOfMiracles · 26/03/2021 07:44

I also have low Papp-a too, are you taking aspirin? xx

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MumOfMiracles · 26/03/2021 07:46

I am 37 so my age factored it too, nuchal was a 3 so just within normal range, thank goodness! Got everything crossed for us both. xx

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summerhillgang · 26/03/2021 08:19

Yes it's hard to think of much else @MumOfMiracles. I am trying to have faith that whatever is meant for me will just be.

I take 75mg of aspirin each evening, and did a month before we conceived. After ttc for ages I do believe it was a factor as it was the first month including it into my routine. I am wondering if I should increase the dose to 150mg in light of lower than average Papp-a.

Thinking of everything waiting on this thread X

MumOfMiracles · 26/03/2021 08:31

Yeh it could only help @summerhillgang, am on 2 a night as MW advised it's best to take aspirin in the evenings, no idea why but going with it. Keep us posted! Here whenever you want or need to reach out. xx

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MumOfMiracles · 26/03/2021 08:39

Hopeful for us both @summerhillgang! Yes we are both in HR bracket, but also both have signs it could be good news coming our way! xx

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MumOfMiracles · 26/03/2021 08:41

Holding on to whatever positives I can find to get through this waiting period, so grateful for Mumsnet too! xx

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