Active discussions

Please or to access all these features

Talk
Antenatal tests

Get updates on how your baby develops, your body changes, and what you can expect during each week of your pregnancy by signing up to the Mumsnet Pregnancy Newsletters.

Original poster

Down’s syndrome diagnosis - looking for hand hold

70 replies

IVFWarrior40 · 01/02/2022 09:51

Hello, I have just found out yesterday that my baby has been diagnosed with Down’s syndrome. I am nearly 14 weeks. I’m so confused as the scan at 12 weeks looked fine. The nuchal fold was 2.9mm but the sonographer didn’t seem concerned at all.
Then I had my bloods done. My Papp-a was 0.46 mom and hcg 3.57 mom. As I’m 41 and an ICSI pregnancy this brought our risk down to 1 in 5.
I didn’t want to risk an invasive test so had the Harmony blood test and got the results yesterday - 99/100 chance baby has T21 which is pretty definitive.
My world came crashing down. I assumed that because my scan and bloods were all within normal range that everything would be ok. How wrong I was.
I’m booked in for a cvs tomorrow to confirm the diagnosis.
I’m going through every emotion right now and not sure what I am asking. I guess Im just looking for people who may have been through something similar. I feel very scared and confused and not sure what to do.
Please don’t judge but I’m considering a termination as I’m not sure it’s a path we as a family can go down. I’m just so scared of what this entails.

OP posts:
WhatsWithAllTheCarrots · 03/02/2022 19:27

Wishing happiness and strength to you OP, whatever the future holds xx

Doomscrolling · 03/02/2022 20:02

Whatever the next step on your journey, I wish you strength. Flowers

User8721643839 · 03/02/2022 20:09

Sending you a massive hug ((((💗))))

McScreamysGhostPants · 03/02/2022 20:14

Sending you love. What a heart breaking situation to be in. Your little girl sounds like a delight though and I wish your family all the best ❤️

AmberRoseGold · 03/02/2022 21:22

I hope that you are treated with as much kindness and compassion as I was. It made such a difference to a truly rotten experience. I still think with gratitude of the clinical staff who helped me. Wishing you strength and as easy a time of it as you can have.

TheVanguardSix · 03/02/2022 21:35

OP, I've been through this twice consecutively. You have my loving handhold, all the way. It is so hard. The ARC forum was a real lifeline for me (I decided to terminate and of course, it's a decision nobody should ever have to make... but if that's the decision you do come to, do lean into ARC's support: www.arc-uk.org/for-parents/arc-forum/).
Sending you love and strength. Flowers

ghislaine · 03/02/2022 22:01

I had a termination for T21 at just over 14 weeks. It was my first pregnancy and a terrible time, my world was shattered. I have that little boy in my heart always. But I also know that what I did was right.

One thing now, 12 years on, is that I have become a very calm person. Very little stresses me now because I had to make such an awful decision (in the days before the operation, I hoped he would die in the womb so I could be absolved of responsibility) and I have lived through it. He also taught me that sometimes being a mother means taking the pain so your child does not suffer.

If you want to ask any questions about what might happen, please do. Mumsnet was my lifeline in those days. It truly is one of those things you cannot understand unless you have been through it.

Love to you and your family.

RunningFromInsanity · 03/02/2022 22:17

My cousin has DS and to put it bluntly, it’s awful.
He’s 30, mental age of a 6year old, pretty much incontinent, and can be incredible violent.
My aunt and uncle struggle, my other cousins had admitted that as much as they love him, he has negatively impacted their lives and they are racked with guilt as they know when my Aunt/Uncle can no longer care for him, they will have to put him in a home as none of them want that responsibility.

PanickedE · 03/02/2022 22:36

So sorry you’re having to make such a difficult decision. No decision is wrong Flowers

ButterflySalami · 03/02/2022 22:52

I'm sorry you're in this situation, OP. I was too, about 6 years ago now, and we made the very sad choice to terminate. I have never forgotten, I still feel sad sometimes, but I don't regret it and feel we made the right choice for our family.

I don't know if this is helpful or not, but if you do choose to terminate, it is still ok to grieve. It took me awhile to give myself permission to do that. I felt like I didn't deserve to grieve the loss of my baby as I had chosen the pain I was in. Maybe you won't feel that way, but it would have helped me to have someone tell me early on that it's ok to grieve.

Wishing you strength and peace in making your decision FlowersFlowersFlowers

Christmas21 · 04/02/2022 11:43

I'm so sorry. Sending you lots of hugs xx

averythinline · 04/02/2022 11:54

Third speaking to ARC...
Really helpful and have such experience you can ask and say anything....take some time ...personally I didn't find it helpful to look at lots of downs stuff in the not confirmed period as too early to process whilst so raw ..just needed a bit more processing time

milki · 04/02/2022 15:59

Sending you love and strength @IVFWarrior40
I went though a very similar last July- low triple test, high NIPT, amnio confirmed a T21 diagnosis. I chose to tfmr. Whatever you decide is the right decision xx

rubyandbel · 05/02/2022 11:48

I had my 6th child nearly 6 years ago. In the 18 months before that I had 3 miscarriages that I was told was most likely down to the poor quality of my eggs due to my advanced age, I was 35 ish.

At 11 weeks I had the harmony test. The results took 4 days. It confirmed our baby girl did not have downs and some other significant conditions. Our baby was born healthy at 35 weeks.

I already knew that if the test indicated a 99% of downs then I would of ended the pregnancy. I had a teen with various conditions that had affected our lives for a long time and didn't want to knowingly bring a child into the world with a potentially serious disability. I had to think of my other children and my husband and mines age. I had the harmony test to speed-up the process so if it would of ended in termination it would be sooner rather than later.

Sending you strength to get through this difficult time.

Original poster
IVFWarrior40 · 05/02/2022 13:32

Thanks everyone.

We made the agonising decision yesterday to end the pregnancy. It was a decision we believe is right for our family although it breaks my heart to do it. My appointment at the hospital is tomorrow. I’m pleased the hospital were able to fast track this for this so we can begin the healing process.
Absolutely terrified but with my husband with me I know we can get through it xx

OP posts:
Plutoisaplanet · 05/02/2022 13:36

Thinking of you op 💐.

viques · 05/02/2022 13:42

Thinking of you today. You have made the decision that is right for you and your family but that does not lessen the sadness you will be feeling. Much love to you and your OH.

S1981 · 05/02/2022 16:00

Sorry I’m late to this thread but I’m looking as I’m in the exact same position albeit a wee bit behind. 1 in 6 chance for me but similar numbers and I’m also 41. Waiting for Harmony results.

I really just wanted to say I’m so sorry, pregnancy can be so difficult. Shows such amazing strength to still be able to offer such praise to the support network around you when you’ve had such a shock and disappointment. You sound like an extremely strong woman. Will be thinking of you tomorrow. X.

Bekind2yourself · 05/02/2022 17:42

Flowers Thinking of you @IVFWarrior40.

I know how painful a decision this is. Do allow yourself to grieve. The phrase that help me through this time was ‘I’m suffering so my baby doesn’t suffer’ .

I am so glad you and your husband are such a strong unit. That will see you through. Sending you both love.

Doomscrolling · 05/02/2022 19:29

All the best to you, OP.

New posts on this thread. Refresh page