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

[MumOfMiracles]

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

@supercatlady thanks so much for sharing! How is he getting on?

Know it can vary so much, I was diagnosed at 37 and my Son at 14 months. I had learning difficulties at school but nothing else aside from that related to KDVS I know of. My Son was born hypotinic but thank God! He resolved it before his first birthday and is a very, smiley, super active and happy little soul. x

Keep you and your baby in my prayers @Kellyd79! For positive news ahead! x

@Kellyd79 it is such a difficult balance. Trying to accept the situation and be realistic; whilst also maintaining some hope for baby and being prepared to fight for your baby. Hope you’re ok x

He was diagnosed with developmental delay and hypotonic cerebral palsy when less than a year old. Walked at 2.5 years, was stringing 2 words together at 5.
Now he’s a sensitive, kind and chatty young man and is in supported living. He volunteers at a local museum and wants to be an actor.
There is such a range of needs and there are others in the group who have only been diagnosed as adults alongside their little ones.

Hi @Kellyd79, how are you lovely? Just wondering if you've had the covid jab yet? Or plan to. Am booked to have mine on Sunday but feel in 2 minds about it as its still a fairly new vaccine. x

@MumOfMiracles I'm ok considering thank you, I decided not to have it until after birth. My partner had his first last week and I was invited to have it but I was told there's not been enough testing on pregnant women for them to say its absolutely safe. I just thought with everything else im going through at the moment ill leave the jab a few more months.

Hi @Kellyd79 and @Mummy2O, how are you lovely Mama's getting on? All well I hope. xx

@MumOfMiracles hello, I'm doing OK thank you. 29 weeks now, I'm being induced at 37 weeks so not long to go. How are you doing?

Wow! How exciting! How is baby doing? Yeh all doing well thank you, so excited to meet her! Still has borderline ventriculomegaly but the fluid levels had dropped slightly at last scan and she is growing well so counting my blessings. Got next scan and MRI brain results for baby on Wednesday so am looking forward to seeing her again on screen. Lots of love to you and yours xx

Here is a pic of my girl at bonding scan. xx

34 weeks pregnant on Saturday so counting down those last weeks with you. :)

@Kellyd79 I just wanted to say hi. My daughter had Edwards (diagnosed at 23 weeks) and was born at 39/40. If I can be any support to you at all please do get in contact.

Have you found the Rare Trisomy parents groups and the pregnancy information eg trisomy 18 pregnancy growth charts etc? We found them all really helpful.

@Hoowhoowho I'm on the trisomy groups on Facebook which I've found helpful. The growth charts baffle me if I'm honest, at my last scan I was told she's measuring around 10 days behind but I had a midwife appointment today and she said my uterus is measuring ahead and my fluid is normal amount. So that's confused me a little

@MumOfMiracles aww she's beautiful I'm pleased it's all going well. Considering my girl has edwards she's doing well, she has an exomphalos and a small vsd but other than that it's all good. Makes me glad I decided to continue 😌

Here's my fighter

Oh my goodness! She looks so precious! I hear you too, feels such a shock to be asked if you want to terminate your pregnancy, triggers all sorts of fears. So glad our girlie's are growing and going strong! Fighter for sure. Looks like your girl is so content and snuggly in there, bless her. Rooting for both our beautiful girls as we count down our last weeks. xx

Wow! Those pictures are fantastic @kellyd79 and @MumOfMiracles! They are so clear. It is amazing. I hope you are both doing OK.

My DS2 is now three weeks old. I had a c section at just over 39 weeks, the day before it was actually planned as my waters went. I still can't quite believe he is here.

She looks beautiful . Glad to hear you’ve found the groups, hopefully you’ve seen all the survivors.
Babies with Edwards are usually small but there are specialist growth charts for them both pre and post birth. We found DD dropped off the normal charts but stayed on her curve on the T18 charts so we were able to hang off on induction until a bad scan at 39 weeks (we did daily monitoring and weekly scans) which we were glad about because the later they’re born the better they do with Edwards.

Also in hindsight I wish I’d had a CS because the most recent evidence pointed to a better survival rate. Sadly too late for me. Instead I had a very very quick (15 min labour) induction.

This is my DD who would be six in September.

Huge congratulations to you @Mummy2O! Hope you and your sweet boy are keeping well. Much love x

Hey @Kellyd79! Been thinking of you and your sweet baby as our due dates are now so near! Hope you are both keeping well lovely. Praying for a safe & smooth delivery for you. x

@MumOfMiracles hi, sorry its taken me a while to respond, I'm having a nightmare with the hospital, they had me in for 3 days for steroid injections and then decided they weren't going to induce at that time, I had a fetal med appointment this week and they booked me in for induction on October 4th and now my local hospital decided to tell me at 4pm today that I have to go for a scan first thing tomorrow. I just wish they'd leave me alone for these last 2 weeks instead of making me more nervous and stressed! 😫🤣 how are you doing and how is your baby?

Bless you lovely @Kellyd79! You are doing so well. Keeping you and your beautiful girl in my prayers. Had sweep done today and am booked in for induction at 10am in the morning, due to low papp-a, they need to be safe. So excited to meet my li'll baby 👶 Lots of love to you and yours xx

@MumOfMiracles oh wow, how many weeks are you? My little girl is only weighing around 3lb 6oz so I'm hoping she grows abit more! Good luck for tomorrow, please let me know how you get on

40 weeks tomorrow, how many weeks are you now lovely? Hoping all goes smoothly for you and the scan has great results!