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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Amniotic band syndrome, missing both arms

110 replies

OnToTheThird · 19/01/2018 01:29

My heart is totally broken, our routine 12 weeks scan on Monday flagged up that baby was missing it's right forearm and hand.
Today we had a consultant check and it's been confirmed that it's not just the right arm that's been affected it's also it's left. Baby has a small upper arm on the right and left side stops just below/on the elbow with no digits to either.

We already have two healthy boys of 5 and 2 and this blow has just totally pulled the rug from under our feet.

I've been trying to research into babies that have been born missing arms and generally I'm only coming across one arm that's affected so quality of life isn't really affected as they still have one arm and working hand to work with, how will my baby deal with the basics without!?

We've been told it's probably been caused by amniotic band syndrome and we're just unlucky that it's happened to both arms.

We were obviously given the option of ending the pregnancy which we haven't totally ruled out but for now we've put it to the back of our minds until we know what roads best to take for baby and our boys.

If anyone had experienced this I'd be so grateful either way of experiences as right now I feel like I'm the only one going through this as I just can't find anything about it anywhere with both arms and the unknown is petrifying!!

OP posts:
Are your children’s vaccines up to date?
ClangerTwanger · 14/04/2018 14:20

Wishing you all the luck in the world and more so. I’m so sorry for your loss. What a beautiful idea with the memorial 💕 I pray you get your rainbow 🌈 xxxxxx

OntoTheThird · 14/04/2018 16:51

Well it looks like we have a little rainbow coming our way after all!!! 😱 let's hope this one sticks and becomes a healthy little baby!!

Amniotic band syndrome, missing both arms
OP posts:
MrsTylerJoseph · 14/04/2018 16:58

Congrats on the positive test. Best wishes.

IsFuzzyBeagMise · 14/04/2018 17:00

Best wishes to you X

PeonyTruffle · 14/04/2018 17:02

Hello little rainbow 🌈
Sent from your big sister, best wishes OP x

Moonflower12 · 14/04/2018 17:05

Congratulations on your little 🌈!

OntoTheThird · 14/04/2018 19:01

Eeeek I'm so nervous!!! Husband cried, I've cried! It just feels very surreal still.
Last week my best friend told me she was expecting and had already hit her 12 week mark, she hadn't wanted to cause me upset so soon after losing Eleanor so didn't tell anyone not even her own Mum! I was absolutely over the moon for her but I did spend 2 days crying as our babies would have grown together like we did... now I can't believe my luck this may still happen!!! Dating it says 3 weeks 6 days and it's given me a predicted due date of my eldest sons birthday... 23rd December 🙄 whoops another xmas baby then! Both my boys are Dec and jan and within 3 weeks of each other 🤣

We weren't actively trying we were trying to track using family planning method for abit until we felt ready to think about trying properly if nothing had happened on its own accord... guess this little one wants to be known as we haven't dtd in any of my "fertile" days! Just really hope this all works out ok I'm feeling pretty scared incase repeat happens even tho we've been told very very unlikely! (Sorry if people are double reading I didn't want to only comment on the one thread and I'm pretty new on posting on here so not sure if you can integrate threads or not?) Thankyou for all your lovely comments xx

OP posts:
Singlikemiranda · 14/04/2018 19:11

Such lovely news, congratulations OP

SinkGirl · 14/04/2018 19:19

So happy to read this. I’m sure these early weeks will be difficult for you - are you having any counselling? I think it would be good to talk to someone and hopefully they’ll want to monitor you from early on x

DeadButDelicious · 14/04/2018 19:23

Lovely news. 🌈

Rachie1986 · 14/04/2018 19:30

Lovely news. Wishing you all the best :-)

pimlicolife · 14/04/2018 19:47

Congratulations that's lovely news. I wish you all the best Smile

Belliniteeny · 14/04/2018 20:41

Congratulations, lovely to hear. Wishing you a happy and healthy pregnancy. Keep us updated.

MadameJosephine · 14/04/2018 20:49

So sorry to hear of the loss of little Eleanor OP Flowers

Massive congratulations on your surprise BFP, wishing you all the best for a happy and healthy pregnancy

surreygirl1987 · 14/04/2018 21:05

Lovely news x

ClangerTwanger · 14/04/2018 22:39

Congratulations that’s absolutely wonderful news. Good luck for a happy and healthy 9months 💕 xx

OntoTheThird · 15/04/2018 08:12

@SinkGirl no counselling was offered believe it or not!
When we went for the results our consultant was asking questions about wether we had any doubts if we made the right decision, would we have made a different decision based on the gender of the baby, do we have doubts that kind of thing. Because we both were saying how we would make the same decision again she said we didn't seem to look like we needed any, but obviously I think if I asked now, they would definitely refer me. I'm not sure if I need to go though, we're all pretty open about talking about what happened and my family and friends all know so it's not a hidden secret.
It's something I will keep in mind though if the anxiety starts to take over!

OP posts:
WhereDoLostSocksGo · 15/04/2018 13:40

congratulations op

i also had a tfmr at around the 14-15 week mark which was very traumatic. also a little girl.
another pg hasnt happened for me (almost 2 years on now sadly) but wanted to wish you well. i dont think counselling is offered routinely - i wasnt offered it either.

CottonSock · 15/04/2018 13:44

Beautiful rainbow news. Congratulations

OntoTheThird · 21/04/2018 07:41

Well it looks like our little rainbow wasn't sticking around this time, day 3 of heavy bleeding and cramps so I am pretty sure I have/am miscarrying 😞

OP posts:
lorisparkle · 21/04/2018 08:33

I am so sorry to hear your news Flowers

VanillaSugar · 21/04/2018 08:41
Flowers
surreygirl1987 · 21/04/2018 08:48

So sorry

fizzandchips · 21/04/2018 08:57

So sorry

Ratbagcatbag · 21/04/2018 09:05

I'm so so sorry. Flowers

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