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My beautiful baby boy with one arm - does anyone have experience ??

(12 Posts)
DanishMother Mon 12-Nov-12 18:35:52

Can anyone help me, when I don't even know what I'm looking for ??.....On October 22th we had a beautiful baby boy - but he is missing his left forearm (under the albow). Before you read on and you read all my miss spellings I have to tell you that I live in Denmmark - but with only 6 million people in this Country apparently it is to small to have a forum, where I can chat to people with simular challenges.....

My boby boys forearm got stuck in the stomack somehow the doctors told us and said that things like that just happens some times.
I am so so so happy for my little baby boy - our little brother in this family - but I am also so so so angry, that things like that can happen. I feel very slitted all the time - on one hand worrying about his future and crying when I think about all the challanges - and on the other hand thinking that we will make him very strong and it might not be that bad.
Then there are all the people that - while being very well meaning - comment on his arm and especially the grandparents (4 of them) calling or droping by nearly every day and always having head about someone with one arm doing good in life or giving me a number to some one who knows some one, that I can call. It was worst the first week, then I asked them to back of a little - but I'm still very angry and get angry at them and my friends - I feel like I have to confort a lot of people and tell them that it is going to be okay - now my friends that are pregnant are SO worried that their child is missing something (they forgot to check for the arms at our scanning) - and though I understand that they worry I get to fed up hearing about it. Maby people don't even talk so much about it - it is just when hearing a little about it EVERYTIME I meet someone, it gets to be a lot. I just want them to see my baby boy like my little boy and not always his missing forearm.

Why I'm I so angry? has anyone tryed this with a simular situation ? .....

madwomanintheattic Mon 12-Nov-12 18:46:18

Try

limb-loss/

Not sure that will work. Links from iPad a nightmare! I know of at least one mner with a child with congenital limb loss - hopefully she will pop by!

Congratulations on the birth of your gorgeous wee boy - the unexpected is guaranteed to knock you about for the first wee while, and folk genuinely don't know what to say. It will get easier, but let yourself go through the shock and grief process, however guilty you feel for it. No need x

And congratulations again! Will try and re-link if I have failed hugely...

madwomanintheattic Mon 12-Nov-12 18:50:17

Failed.

Try googling the UK limb loss information centre. They have a parent centre that I was attempting to link to, and some info etc on congenital limb loss. If nothing else, it will reassure you that there others in the same position.

<when we were trying to move to Canada, we were told that there were no paediatric occupational therapists available, as there were no children requiring that service within a few hours drive. It made me question my sanity, was I really about to put my child in an 'only gay in the village' scenario?? What did they do with their sn kids? Keep them in the basement? Of course, when we arrived, there were a plethora of paed ot's. and a plethora of sn kids. You are never alone, I promise x>

SallyBear Mon 12-Nov-12 18:51:06

DanishMother congratulations on the birth of your baby boy. It's a terrible shock I know when the child you have been longing for is born with problems. Please allow yourself some time to grieve for that, but don't let it define him. He will certainly have physical difficulties, and you will find ways to overcome that and think of practical solutions to help him develop. But at the moment as long as he is feeding well, sleeping and growing then I would enjoy getting to know your new son.

My daughter (DD) was born with a cleft palate, no ears and a very small jaw that affected her breathing and feeding. We spent a long time in hospital when she was born, and have had many operations over the last 13 years. She has never let her disability stop her from doing anything, and I am sure you will be just the same for your son (DS) as he grows up. smile

MrsPresley Mon 12-Nov-12 18:56:41

Congratulations on the bith of your son!

I dont have any experience but wanted to say, the grandparents will calm down eventually smile I'm a grandparent parent myself, my grandson is autistic and while I worry about him, I also worry about my daughter and how she is coping with things too, I'm her mum and just because she's an adult doesnt mean I stop worrying smile

I know when my grandson was first diagnosed I was constantly asking my daughter if she was ok, did she want to talk etc...

They are probably worried more about you than their beautiful grandson. They just want to try and make you and your husband feel better, although their comments are making you feel worse.

As for your friends, I think it might just be a case of, everyone thinks their baby will be born "perfect" and beautiful and when faced with the reality that sometimes things dont work out the way it's supposed to be, it frightens them.

Your liitle boy will grow up and cope wonderfully smile

I know you probably dont want to hear this, but I have a friend who lost his arm when he was 12, he adapted, refuses to use an artificail limb and believe me when I say it doesnt stop him doing anything.

He plays sport, mainly golf and tennis and he can roll a joint cigarette with one hand, it really doesnt hold him back at all.

The only things i can think of that he cant do is tie shoelaces, but he gets round this by wearing slip on shoes.

EllenJaneisstillnotmyname Mon 12-Nov-12 19:02:42

My friend's DD was born with her arm missing from below the elbow. She is now 8 years old and doing really well, very confident and outgoing. She does get some staring but it doesn't seem to bother her. Her mum is involved in this charity http://www.reach.org.uk/reachcms/ which is British but may still be of use to you.

Congratulations on your lovely boy. I'm sure he will surprise you. smile

EllenJaneisstillnotmyname Mon 12-Nov-12 19:03:27

www.reach.org.uk/reachcms/ Sorry forgot to tick the link box.

babiki Mon 12-Nov-12 19:38:21

Hello and I understand you are feeling shock and saddened, just want to tell you a story: I know a boy just like yours! He is 18 years old now and lovely and full of confidence! When he was born in the Czech Republic, attitudes to any differences were bad and his mum was asked by the nurses if she wants to leave the hospital as the last one ( so nobody would see him..) but he was gorgeaus and loved and grew into a lovely young man! He has an artficial arm, is winning swimming competitions and can speak 3 languages. When he was younger he told my son his arm is magic and took it off smile he is great with kids and studying Uni now. So don't despair, things will get better.

Iceflower Mon 12-Nov-12 19:43:51

There are two children in ds's school with an arm missing below the elbow (400 children in school). One is 10 and in my ds's class, the other one is 6.

Both are lovely children who cope very well. The 6 year old uses a scooter to go to school and is annoyingly fast!

The 10 year old finds writing hard, and uses something called Clicker 6 in class. He manages to join in with most team sports, and recently managed to take full part in a drumming workshop.

One of the mums (not of the two dcs above) also has an arm missing below the elbow, and she manages very well with 3 toddlers grin

I am sharing this with you so you get an idea of what is possible. Congratulations on the birth of your son smile

justaboutchilledout Mon 12-Nov-12 19:59:07

Message withdrawn at poster's request.

5inthebed Mon 12-Nov-12 20:02:16

Congratulations on your new baby boy.

It must be very overwhelming for you having everyone thrust information your way when you've not long had your baby. I expect people are just trying to be helpful, but you did well asking them to back off for a bit, you need time to digest what has happened.

I have no direct experience but I'd do have a teenage cousin and he was born without an arm below his elbow. He never liked using his prosthetic limb, it ended up in the toy box and he hasn't used one in years.

He is an amazing sportsman. He has never let his loss of limb affect him, he truly is an amazing young man. He plays tennis with able bodied people in the school in competitions, does martial arts and usually tries other sports given the chance.

DeWe Mon 12-Nov-12 20:19:57

Firstly lots of hugs.

My dd2 (age 9yo) was born with her left arm missing from below the elbow.

I was lucky in that it was spotted at the scan, and so I had time to get used to it, and to mourn my perfect baby that I thought I had. It's a bleak time though. Let yourself have time to get used to it. I thought I was going to thump the next person who said to me "as long as it's healthy...".

While pregnant we made contact with Reach-there are similar groups certainly in Italy and France, Reach can put you in touch with them, but there are members from other countries. If you join Reach there's also a facebook group that is great for asking questions. Reach is better than limbloss, as limbloss is for arms and legs, and also adults, whereas Reach is children with arm loss.

Dd has proved that she is ever bit as capable as her big sister-the only thing she hasn't done is play the piano-she's learning the trumpet instead as you only need your right hand for this.
She does gym (and has won medals against "normal" children), little bit of tennis, dance, judo, swims, scoots (fast!), rides a bike (you can get a device that puts both brakes onto one hand), cuts with scissors, performs in panto, uses the computer and mouse without difficulties, ties her school tie herself, does shoe laces, can do buttons, zips, sewing...
I don't think there's anything in school or out she has not been able to join in with, although she has been known to try and use it to get out of stuff she doesn't want to do wink

She currently uses a myoelectric arm, and a "cosmetic" (looks like a doll's arm) one for dance. She got her first arm at 5 months, and wore a cosmetic one until she was about 18 months, when she got her first functional one, followed by her first myoelectric at about 4yo.

Most children now don't use a prosthesis-we called her first one the world's most expensive teether, because all she did was pull it off to chew on it.

There are adults who come along to Reach gatherings who were Reach children, and they are very inspiring for them. There's a pilot, a doctor, paralympian swimmer, teachers including a games teacher, lots of other people who do "normal things" and they drive cars, play sport, cook, do all sorts of things that you'll be wondering if your ds will ever manage to do.

It took me about 6 months to really get over that "why her" feeling. We even managed a few smiles over things. I remember one time being stopped by a concerned old lady when dd was screaming her head off in the buggy.
"I think your baby's broken her arm"
"No" I said. "she's just hungry" and continued off at speed to where I could feed her.
When I arrived I saw that her prosthesis had twisted round to an impossible angle. No wonder the lady thought she'd broken her arm! Surprised she didn't contact the police. grin

I'm not sure now whether dd2 would choose to have two hands or not. Sometimes she says she wishes she did. But at the same time, it gives her oportunities that she wouldn't otherwise have-and she loves being the centre of attention, and she has some very good friends that are the same as her. I would choose two hands for her every time, but she is (usually) comfortable with who she is and how she is.
I said to her when she started asking "why me" that all children are born with a little bit that isn't perfect, and hers is just more obvious in that you can see it. She loved that and has repeated it many times.

One adult member of Reach was born with no hands (above elbow). He is very much a get up and do-er. He does fundraising talks for Reach, which I believe include peeling and chopping an onion. I think he said the most popular question asked him was how he does his flies on his trousers.

Your ds will surprise you in what he can do. He will achieve what he wants to do, and you will, in time, be able to look at him and feel pride and joy without noticing his arm, for it will be just part of him.

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