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High risk screening results

(30 Posts)
Stacy653 Sat 10-Aug-19 19:32:10

15 weeks Monday and high screening for downs

HKM94 Sat 10-Aug-19 22:37:14

Hi @Stacy653 I’ve just seen your thread as I myself have just wrote a very similar thread. I am 13 weeks and I got the results on Wednesday and they were not good. Due to high HCG levels and low Papp-a levels (this means the placenta is not functioning as it is should) my baby has a 1 in 41 chance of having downs. I am getting the test on Monday and will have the results by Thursday. I feel like my whole world has come crashing down and I don’t know what to do now

Stacy653 Sat 10-Aug-19 23:41:12

It's a nightmare, completely understand what you are going through we have been living this uncertainty for nearly two weeks. My partner is trying to be positive yet I am not so. Been looking into reasons and trying to search the met for any kind of help. This is my last resort. I'm booked in to have the needle on Monday and absolutely terrified and discussed what we would do if results come back bad. The only comfort I can offer is it biology and it's no ones fault. The stress is no good for anyone, and we need to carry on. What hospital you under?

Starlight84 Sun 11-Aug-19 01:31:01

My friend was one in five chance. She had the screening and perfectly healthy child who is now 9years old. I personally wouldn’t have it done if mine had come back high risk but that is my personal choice and everyone’s circumstances are different. It is not a nice position to be in. Hope everything goes ok for you both xxx

HKM94 Sun 11-Aug-19 06:48:31

@Stacy653, yeah I was exactly the same reading anything online that would try and give me an explain as to how this happened and what could go wrong especially with the placenta, that scares me more than the outcome of Down syndrome because I don’t want to
fall in love with this baby and then something go wrong but as others have commented on my thread that can happen anyway.. but I guess it kind of feels like with this results it is already telling me something is. I know what you mean about partner as well, he is always so optimistic even though he has 100% agreed on what we will do if the test comes back positive.. I know he never lets me see him worry because he know it will make me worse but for once I would love to know how he is feeling honestly.. though he has said if it all gets a bit much for me he is happy for us to terminate and wait (my very long thread is a huge explanation of why I’m not 100% about the whole pregnancy anymore)

I am under the fertility medicine unit at LGI, that is where I am having the needle test done tomorrow 😩 then I’ve got to wait till around Thursday for the results

Fingers crossed for you that your test goes well and you get a positive outcome 💕

Stacy653 Sun 11-Aug-19 12:57:45

@hkm94 tried looking for your post but can't find it. I completely understand how you feel. I really hope you get the positive news we are both longing for.
I know how hard it is to stay positive, and I myself are trying to prepare myself for bad news, I'm lucky to have two beautiful daughters and a man that adores me, that's my positive outlook. I love this baby already we have had 4 scans and we are attached to this baby, however if we do get the news that we don't want to hear we have to make a choice which either way will affect the whole family. I don't know anyone with Down's syndrome and haven't got a clue what to expect. I really really wish you all the best and if you ever need to talk without judgment or sympathy I'm here for you x

HKM94 Sun 11-Aug-19 13:09:22

Hi @Stacy653, my post is on the talk- pregnancy and it’s called What am I do 😔. I know what you mean it is so hard to stay positive and think positively.. I start crying when I look at my perfect little family at the moment.. like you said I’m pretty much in the same boat as I have my DP who adores me and would move heaven and earth to make me happy (he can achieve this quite easily and it tends to annoy me more lol) He is my world and we have our amazing little girl who makes every day wonderful! She is so cute!

I don’t know anyone else with Down syndrome either and no one in my family is affected so I was so shocked by the results but i know now it’s not genetic not really.. it is a chance issue when the egg and sperm meet sad

Thank you so much and same to you, if you wish to talk at all, I’m here. We are both having the test on the same day so if you wish to talk, just know I’m here x

Stacy653 Mon 12-Aug-19 06:31:57

Good luck @HKM94 xx

HKM94 Mon 12-Aug-19 08:26:39

@Stacy653 thank you so much! Good luck to you too xx

Stacy653 Mon 12-Aug-19 09:24:35

@HKM94 found out today the test is just the last percent to confirm the baby has Down syndrome. I couldn't look at the screen.
I wish you all the best mate, the procedure doesn't hurt xx

HKM94 Mon 12-Aug-19 12:05:22

Hi @Stacy653, I’ve just pulled up at home, test went okay placenta in a nice easy spot for them to get to.. will get the results in 48 hours. I couldn’t look at the screen either and I am massive wimp when it comes to needles so I didn’t dare look in that direct, I just had a chat with DP and nurse so it took my mind off it. The baby was moving around so much they are so much more active than my DD was at her scans lol. They’ve said baby itself looks healthy so it must be the blood results which has prompted this outcome so fingers crossed the results are okay on Wednesday or Thursday.

I hope your test went okay and I wish you all the best too xx

Aneley Mon 12-Aug-19 17:18:37

My baby had 1:130 high risk for Downs. Midwife explained that that is 130 women with my age, height, weight, medical history - all having babies in all the same circumstances... and then one of them would have a baby with Down Syndrome. We did the NIPT and 3 days later found out that our baby is fine. I know how scary this is, hang in there... fingers crossed!

DorotheaHomeAlone Mon 12-Aug-19 17:34:21

I got a 1:68 risk for Downs on the combined score 10 days ago.

My hospital it trialling NIPT testing for all higher risk women do they took bloods and said I’d get an email within 2 weeks if all fine or a call if bad news.

Two weeks is this Friday and I’m so so anxious. Keep checking my email on my phone. Every time DH starts talking about the baby or I start to feel excited I have to shut that feeling down. I’m 14+3 but haven’t told people because I’m waiting to see if we’ll be going ahead.

We have two young kids already and I don’t think we could cope with a baby with Downs. sad

Stacy653 Mon 12-Aug-19 19:43:27

@HKM94 congratulations mate, so happy for you xx

HKM94 Wed 14-Aug-19 20:03:11

Hi @Stacy653, I’m sorry about the radio silence, just been trying to take my mind off it the last couple of days. I got the results today after having to ring the hospital numerous times. The baby is fine and the results came back okay, we’ve also found out we are having a little boy xxx

Cannyhandleit Wed 14-Aug-19 20:18:32

I am very sorry for the stress you are all going through, I was in the exact same position 5 years ago. We were given a 1:5 chance of downs, low pappa, etc.... my baby did have downs.
I noticed that a few of you mentioned you didn't know anyone who had had a child with downs so I thought I'd just give you a wee insight into our life although I know that everybody has a different experience. My son was born via emergency c section 10 days late after a failed induction. He was taken to scbu quite soon after birth as he had a low temp so suspected sepsis. He spent 2 days in an incubator receiving oxygen and being tube fed, we were allowed to go home after 9 days. His first year was a busy one due to all the appointments we had for scans and tests that were to check for different things that are common in kids with ds. He does have a small ASD (hole in his heart) bat so far it has not affected him but he may need a surgery at somepoint to close it. But that is the only medical problem he has! He has a development delay and struggles with communication but he attends mainstream nursery and will start mainstream school next year! I won't lie he does sometime cause me some extra stress but he is amazing! He has a little brother and another one on the way, he is loved by everyone he comes in contact with and has the most infectious smile! He was my first baby so I had no one to compare him to and I also didn't know anyone else with a child with ds so it has been a huge learning curve but I wouldn't change a thing!
Sorry I hope this wasn't too rambling and sorry no paragraphs 🤦‍♀️ if you have any questions feel free to ask!

Stacy653 Thu 15-Aug-19 05:49:05

@HKM94 congratulations I'm so happy for you, we are still waiting. We know what is coming. Xx

Stacy653 Thu 15-Aug-19 05:58:29

@Cannyhandleit I don't know where to start, my head is a complete mess. Been a very few long weeks. Our baby had a leaky heart valve, they didn't pick anything else up on scan. We are still waiting for results but don't hold out much hope. We love this baby but don't know what to do for the best.
My partner is older than me and we have no support network. It just seems like we are living a nightmare, that we can't wake up from. I know children with dis require a lot more help and have a lot more health issues. I know we would love him or her, we live in a place where there is a lot of negativity towards someone who is different and know they would be bullied.
My head is a complete mess tbh

Cannyhandleit Thu 15-Aug-19 06:50:04

I know it's a very hard position to be in I honestly do. I really struggled with it all. 2 days before we were due to have the amino I had a bleed and after having 2 miscarriages we made the decision not to go ahead with the test, I couldn't bare it. For me that was the best decision I made (again this is very much about my experience) I cried and worried for a very long time but as soon as my baby was born all those feeling disappeared and I have felt nothing but fierce love for him.
All children with ds will have a learning disability but that can range from mild to severe, currently my son is at the mild end so he really doesn't need much extra help or medical care. We have speech and language dipping in and out from time to time but that is really about it! Again this is all my experience I just wanted to show you that really his care is no different from that of a child with a different learning disability.
He has a cardiac review once every 2 years, hearing and eye tests yearly and blood tests yearly. He was crawling by his 1st birthday and walking by his 2nd.
I just want you to see that it really isn't necessarily as scary as you think it might be.
I really recommend going on Facebook and searching some bloggers that have pages that are very honest and helpful. There is 'don't be sorry', 'Ollie and cameron' and 'positive about downs syndrome' there are loads more.

I am really sorry for what you are going through.

Cannyhandleit Thu 15-Aug-19 06:54:25

Sorry I'd actually read the post like you'd already had your results! I really hope the come back clear x

June340oo Thu 15-Aug-19 08:03:17

We’ve just received our results last week, we had a risk of 1 in 76. The nuchal test was 1.2mm and the sonographer said she could see a nasal bone. So we thought all was fine, had the blood test and then had a phone call 2 days later to say we were high risk. Paid for the NIPT test, had results back on Tuesday baby doesn’t have downs and risks came back as 1 in 10,000 and have found we are having a little boy. If he had of had downs we would continue with the pregnancy no question we just needed to know to allow ourselves to become prepared. I hope all turns out well for you OP and you get the result you are hoping for x

Gilbert82 Thu 15-Aug-19 08:22:08

The NIPT is not diagnostic so cannot tell you if your baby has Down syndrome or not, it will only give you a “risk” ratio (albeit more accurate than the NHS combined test). The only tests that can tell you for certain are Amnio and CVS.
I also have a child with Down syndrome. Ours was a postnatal diagnosis following a straight forward spontaneous labour. Our little one has no medical complications but as @Cannyhandleit says will have learning delays (which any child DS or not could have). Our little one currently attends a mainstream nursery and absolutely loves it. Other than a few extra appointments (SALT, physio, hearing tests, annual paediatrician and thyroid blood test) I don’t feel our journey is much different to our friends with children the same age but that might be because I know no different smile. If you have any questions feel free to send me a message. Wishing you all the best for your results and a healthy pregnancy x

MohairMenace Thu 15-Aug-19 08:39:24

I just want to echo what Cannyhandleit said.. my sister is in her mid 30s and has never had any serious medical complications. She developed an eye condition in her 20s (which is pretty common in downs) but this was treated/ halted with a simple laser operation. She’s very fit and active which she gets from my Dad (she has his athletic figure too - jealous!).

In terms of lifestyle, she doesn’t work but she does have a busy schedule of full time day care - and she has a lovely boyfriend who’s family we’ve all grown very close to, we often all go away together for long weekends etc.

Best of luck whatever the future holds. x

Stacy653 Thu 15-Aug-19 09:24:10

Just had the call, confirmed baby has Down syndrome, completely in a mess 😞

MohairMenace Thu 15-Aug-19 09:29:32

Oh Stacy653 what a shock, everyone on this thread is behind you. Much love flowers

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