symbrachydactyly - need some advice please

[spudz]

Its a bit of a rare condition (stumps instead of fingers) so not sure if anyone else out there has any experience of it themselves or with their children. My DS no2 was born with it 6 years ago - hasn't really been a problem as only one hand affected and he has enough finger length for pinch grip. He is a sunny little chap but is becoming increasingly angry and frustrated about being "different". Would really appreciate any advice from anyone else who has been there with their child.

Hi, just writing to give you some sisterly support, but you're further on than I am. My little boy (3 years old) has got 6 fingers and toes, though they are shorter than normal and he can't use his extra pinkies. With regards to coping with looking different, just be as positive as you can, without being needlessly sunny when he wants to talk to you about how crap he feels, or how other people make him feel. Try to make out that it's more their problem than his, but he won't be able to truly take that in until he's much older. The fact that you always thought and said that though will help sow the seed so he can accept himself and his differences when he gets older. In the meantime, it's probably going to be rough. I don't know how bad it's going to be for my son. So far, when kids have noticed they think it's cool, but then they bring their friends over to look and it turns into a mini "freak" show. Can't say I like that, and I doubt my son will when he realises, but hopefully we'll all be able to stay positive.

Hi Alethia - thanks so much for the advice. Can sympathise with you - esp the freak show bit. Found him hiding in the corner of the playground morning with his hand up his jumper saying some children were laughing at his hand - felt so helpless to say something to make it all better - went to staff in the end and it has been dealt with, but know it will happen again and again when I'm not around. He's got a good bunch of mates who I know look out for him. My latest dilemma is that he is really keen to learn the guitar but have been advised that it's unlikely he'll be able to manage - do I let him have lessons anyway? Don't want to discourage him from having a go but also don't want him getting upset and frustrated that he can't do it. Would appreciate any suggestions when you've time. Thanks v.much

Hi spudz - I would let him have a go. Even people without any obvious special needs experience frustration sometimes when trying something new. Only my son's right hand is affected. When he was 6 he wanted to play the keyboard. Obviously he would never be able to play two handed but he learnt how to read music and play simple melodies. He gave up when he wanted to and has now been playing the trombone for 4 1/2 years. I think it's important not limit his options. He tends to find his own level and the things he has problems with are not always the things I would have anticipated and vice versa. He has also participated in rock climbing and Kayaking - both of which I wouldn't have thought possible - which have enriched all our lives in surprising ways.

Which hand is affected? Maybe you could find an instrument that would be easier to play with the other hand. You would, of course, have to explain that the guitar may be a bit hard to learn, but he could try the ...... instead.
Just a thought.

hi all

My son was born without a left hand (tiny palm and little 'buds' for fingers).

He is 8 now and doing so well. He goes to drama, swimming, plays the cornet and goes to cubs.

He does get fed up of other people keep asking and did go through a stage of hiding it when he was about 6 but he just ignores now. It's just me who gets fed up with it now!

Would love to chat with some of you about it.

Spudz - about the guitar.

Depending on which hand is affected, it can be adapted.

I saw a teenage lad in a band recently who had exactly the same as my son and he managed perfectly.

Hi spudz and all,

My 4 year old dd has got arachnodactyly as part of her genetic condition. Her fingers are very long and thin... think of average length fingers with an extra joint and bit of finger on the end.

Obviously, this causes slightly different problems to your children. Gripping things is tricky, and she could get her fingers trapped in child safe toys and stuff when she was a baby.

My dd has started to ask for things like ballet lessons, and although I know that she might not keep up with the rest because of the other things that go with her condition, I will still let her try. It's not about competition at this age, more being able to have a go at something new.

Hi my 7 year old has symbrachydactyly too in her left hand. She has had bones from her toes moved to her hand to give her "fingers" that go up to the first knuckle. She is v relaxed about it but I think things are about to change. At school she is being taught to touch type, play netball and the recorder - not possible! Would be great to be in contact with other mums in the same situation.

Looby - hi!

My son is 8 and I have had these problems too, ie tennis and the keyboard! I persuaded him to forget the keyboard and play the cornet but he copes well with tennis even though he has no fingers at all on his left hand.

As for the recorder - are you members of 'Reach'? They hire out one handed recorders for a small fee.

Whereabouts in the UK are you?

Hi Emma,

Thanks for the advice! I've just looked on the Reach website and the one handed recorder looks interesting. The Reach website also mentions insurance of the functioning hand which I had never thought about. Are you members?

She has decided today that she wants to learn to play the trumpet - phew!! She's been wanting to learn the violin but I haven't been able to find a teacher who would teach her lefthanded.

We are in Hertfordshire, what about you?

Yes Looby, we are members. One you are a member the child's other hand is automatically insured.

We have a good time with Reach to be honest. They put on camps for the whole family over spring bank holiday which are fantastic fun for everyone, it is all funded by donations too. They do summer camps just for the kids (over 10's), have a annual weekend away for the AGM (we haven't been yet) and have regular branch meet-ups (especially at Christmas!).

Definitely worth a look.

We are in the West Midlands, Stourbridge, near Kidderminster.

The trumpet is a good idea! Joe loves playing the cornet.

Great to hear so many messages - sorry I haven't checked thread for ages. Just to let you know ds2 started the guitar and loves it! Really pleased with himself and great to see him get something positive out of something he has come to see as negative (if that makes sense!). Really encouraging teacher helps a lot.
Must check the Reach website - contact with other families would be great as ds very keen to meet other kids with same condition and realise he isn't alone.

Next query is riding bike - ds really struggling to get his balance as he can't get a grip on handlebar - anyone else had problems with this?

Also looby3 - do you feel it was worth having the op done? We declined offer when ds was baby as didn't want to put him thru such an op that wouldn't help that much. At least he already has pinch grip with thumb and first finger. Plastic surgeon now suggesting extending others with hip bone transplant/cage/screw turning etc. Difficult decision as I don't know how much he will benefit from it but at least he can have a say in it now he is older. Any thoughts/experiences?

Have just checked Reach website - amazing! Really changed since I last looked when ds was born.

Plenty of info - methinks cycling problem sorted.....once I find a welder!

Spuds - hi
Where in the UK are you?

My son has had all sorts of adaptions made for his bike but he just throws them off (he doesn't have any fingers on left hand at all, so no pinch grip).

He has just started to ride his bike and is fine if going straight but if he wants to turn left or right he can't judge it probably and ends up going too far and falling off!

We just think practise, practise, practise cos I know when I was younger I would ride not holding on at all....but then you have to learn and get the confidence first which is hard for them.

Oh, and Reach are fantastic!

sorry, properly, not probably!

Hi Emma

Sorry not to have replied to you earlier - been away for half term. We live in Wilts. Thanks for advice re bike - as with most things I guess they find a way of doing things their own way! Someone recently suggested taking the pedals off for a bit so they scooter along the ground with their feet and get used to finding their balance without the hassle of pedalling as well. Know we need to practice more - finding it hard to find enough one to one time with 3 others!
Hope you had a gd half term.

Hi,
I haven't logged on for a while, sorry. Yes, we are really pleased that she had the operation, she can hold small objects in her left hand. She only has tiny bones for her little and ring finger which just give her a bit more balance so that she can hold some objects for a short time. The only issue is that when her toes were stitched after the bone was removed it was a bit tight, so her fourth toe sticks up a bit. This doesn't cause her any issues though.

She's having a tough time at school at the moment, some of the younger children (ie younger than her) are waiting in the play ground for her at break time, asking to see her little hand and then shrieking about how horrible it looks. She doesn't have the most self confidence at the best of times so it makes her quiet, and when people talk to her about her hand she feels like they want to be friends with her so it starts all over again. Children can be so cruel to each other! I'm going to see her teacher today, but really I want her to work out how to deal with it.....

On a positive note, she's loving playing the trumpet!!

Have just joined this site, I am 69 and was born with Symbrachydactyly, just to let you mum's know that it has never interfered with my life, I have had various jobs , married have 3 wonderful children, 6 grandchildren, I was never bullied at school but then there wasn't the social media then, until recently I didn't know the name of my condition, my parents never spoke about it, I had an operation when I was 3 hrs old, and never had more treatment, I am a twin and have an older brother, no one else in the family has this condition, hope this is of some help to you young mum's

Hi my daughter is 6 months old she has no hand or lower arm left side we only just
Seen the doctors at oxford . i do worrie about her life . school . but she is my world x

Hi, my 9 year old son was born with no fingers in his right hand. After several surgeries he has two toes in his hand that help him quite a bit. Around one year ago, he started hiding his right hand with his shirt whenever he is in a public place or with people he doesn't know very closely. He does that so much that he even has shirts that are breaking up in that lower area.

I've been told not to tell him anything about that and just support him to make him more self confident and that's what we're trying with no success. The issue here is that from my perspective, his life is very much about his little hand. If it was only for him, he would miss every activity that would involve meeting new people, we try to push him to do new stuff but he is too aware of his hand.

When he plays tennis only with me, he plays fine, his two little fingers help him a lot to hold the ball while serving but when he plays at tennis group lessons he keeps his right hand inside the shorts pocket or hiding it somewhere else and obviously he plays awful.

Any advice on how you've had success on this?