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Amniotic band syndrome, missing both arms

(111 Posts)
OnToTheThird Fri 19-Jan-18 01:29:45

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!!

SmallBlondeMama Fri 19-Jan-18 01:36:08

No experience or advice to give but just wanted to send some love and support your way! I can't even imagine how you must feel right now. Big hugs!!

BettyBaggins Fri 19-Jan-18 01:45:37

What a shock for you. I have no advice as such either apart from being a Mum but I did just do a quick net search for 'living with no arms'. There are lots of links to some inspirational first person stories and below is an amazing youtube vid of a mum and son, neither have any arms.

m.youtube.com/watch?v=rgB5XyqZoNc

brew

furryelephant Fri 19-Jan-18 03:28:13

Oh OP, I can’t imagine everything that’s going through your head at the moment sadI don’t have much to say, except that I knew a guy in school who’s arms were both undeveloped and stopped at the elbow. He managed to do anything you or I would do smilekids are so resilient and will always find a way to do what they want to! Being born like it means that to them, it’s their normal so they just adapt wink

furryelephant Fri 19-Jan-18 03:28:38

Sorry that wasn’t supposed to be a winky face!

SD1978 Fri 19-Jan-18 03:33:15

There will be difficulties, but they are surmountable- although certain changes will need to be made, both in your house and how you approach things. It really comes down to whether or not you and your husband believe that you can continue with the pregnancy, and what is entailed with bringing up a child with physical disabilities. Wishing you both all the best x

SofiaAmes Fri 19-Jan-18 04:01:35

I knew a family that had a child who had only flippers for arms and stumps for legs and he was one of the happiest most cheerful kids I knew. He participated in everything and had a remarkably normal and fulfilled childhood.

Tmgc123 Fri 19-Jan-18 04:07:02

You must be feeling so confused, I have no advice for you, just tonsay I hope you’re ok xxx

mindutopia Fri 19-Jan-18 08:59:49

No experience personally, but I used to work for an organisation for the visually impaired and had a colleague (he was also a social worker, like I was at the time) who was both blind and missing his lower arms (due to a birth defect but I don't think it was specifically amniotic band syndrome as it has also affected his vision). This was back in the early 2000s, so quite awhile ago now. But he'd had a wonderful quality of life with a supportive family and was, even then able to access the resources he needed. He had done well in school, been to university, etc. and had a good job and lived independently. There are so many more resources now and so much assistive technology that I can't imagine that I a child with a realistically relatively minor physical disability couldn't have a wonderful and full life. Obviously you know what is best for your family, but I hope that would be reassuring if you do decide to continue with your pregnancy.

OnToTheThird Fri 19-Jan-18 09:48:59

Thankyou everybody it is just total rollercoaster of emotions not sure how we should be feeling,

Going to have a chat with a charity "arc" that the consultant pointed us to I'm almost 14 weeks so they were kind of pushing that if medical intervention is what we want to do it has to be sooner rather than later or I believe after 15 weeks it would be a vaginal delivery which for me would be traumatising I'm not sure I'd be able to go through with it.

This weekend is going to be lots of sitting down and weighing up of everything I think it's just so hard to know what the right answer is sad

doowapwap Fri 19-Jan-18 10:03:38

OP I can't begin to imagine what you're going through, it must be so tough for you all.

Keep talking on here if it helps. If you decide to continue with the pregnancy, I'm sure there'll be a wealth of support for you and for the baby.

OnToTheThird Sun 21-Jan-18 12:18:48

Thankyou for everyone's kind words, after so much deliberation and plenty of tears and heartbreak we have decided that it's best for the baby and our children to end the pregnancy.

I am totally heartbroken. I can't even write down how I feel.

If the baby had both forearms we would have something to work with but even the consultant agreed with us that quality of life would be very challenging especially later in life as one arm is practically non existent.

I go in tomorrow morning 😢

ClareB83 Sun 21-Jan-18 12:26:14

I'm so sorry OP. Such a hard decision esp when you have to think about the impact on the whole family. Hope it all goes smoothly and quickly for you 💐

sinceyouask Sun 21-Jan-18 12:27:51

Oh op, what a situation to be in. Fwiw I think I'd make the same choice. Wishing you strength and peace.

Bluepeony Sun 21-Jan-18 12:27:56

I think that’s the most compassionate thing you could do in the circumstances flowers

MyBrilliantDisguise Sun 21-Jan-18 12:29:36

flowers

Cheeseislife Sun 21-Jan-18 12:29:45

So very sorry, that's an absolutely awful decision to have to make. flowers

clarrylove Sun 21-Jan-18 12:33:05

I'm so very sorry. I was misdiagnosed with an amniotic band when I was pregnant and remember how awful that felt. Take all the help offered to you and be kind to yourself. X

purpleviolet1 Sun 21-Jan-18 12:38:13

OP I'm so sorry you are going through this. Lots of love thanks

codswallopandbalderdash Sun 21-Jan-18 12:54:00

I'm so sorry. What a horrible thing to have to face and decide. Thinking of you.

Pastaagain78 Sun 21-Jan-18 13:04:05

Sorry this is happening to you

EssentialHummus Sun 21-Jan-18 13:06:32

Nothing to add but thinking of you OP flowers

bettydraper31 Sun 21-Jan-18 14:33:41

Thinking of you OP x

FlowerPower100 Sun 21-Jan-18 17:54:17

Thinking of you OP! Stay strong xx

ObiJuanKenobi Sun 21-Jan-18 18:00:05

Nothing to add other than support and love to your family. Thinking of you this evening thanks

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