Any parents of babies/children with arm/hand deformities?

[bananabump]

My little man is 6 weeks old and was born with the fingers on his right hand not developed properly. This wasn't picked up on any of our scans so was a bit of a shock when we first saw it! We were told by the midwife and then by the doctor in the hospital that amniotic bands from inside the uterus had wrapped around the top of his fingers and cut off his circulation meaning they didnt grow normally. So we had an appointment yesterday with a plastic surgeon at the childrens hospital to find out what his options were... and she completely stunned us by telling us that it was not amniotic bands that had done this, it was genetic! She also pointed out his wrist and hand itself are smaller than his left anddd his arm is also shorter! Now at the moment it isnt really noticable at all (hence why we hadnt picked up on it) but she said that his hand might stay quite small and be a lot more noticeable so to be prepared.. and that theres a possiblity his arm might not grow very long either. She then also said they arent planning on doing any surgery on his fingers apart from removing the ungrown small balls from the tips of fingers.. leaving him with a normal thumb, 3 stumps and a small little finger. I'm still in total shock and me/OH havent told anyone yet because not even everyone knew about his fingers (I always put mittens on him) let alone now this condition he has! I mean, don't get me wrong I love my beautiful little boy to BITS and I know he could be a LOT worse off but I'm so worried about bullying for him and about it hindering his development and things he wants to do in later life! I can't stop crying, I just don't know what to think. Does anyone else have a child/friend/family member with a similiar sort of problem that can offer me any support? Thanks for reading this ramble! x x x

 

[JASMAK]

I don't have any experience with this, but wanted to send some hugs. Don't say to yourself, 'it could be worse'...this is happening to you, and it is the 'worst' right now. It is OK to be upset about it hon. That being said, your son will have to learn that differences are OK and that people may stare or ask questions, and perhaps getting armed with as much advice, and information, etc...on how to make that as smooth as possible will be best. I have a friend whose daughter has alopecia (no hair) and her mother always put wigs on her. One day her daughter said "no more wigs!". They made her itch, and she didn't care if people asked why or looked. People will tease, but they will tease about anything, right? We were all teased at one point in our lives...but it is how we deal with it. This is where you are going to be the biggest influence.

 

[hattiehippo]

I work with children with physical disabilities in schools and for a while I saw a 6 yr old boy who had been born with his fingers not properly developed - his was due to amniotic bands. He'd had plastic surgery to stretch the stumps as much as possible but basically he had very tiny stumps on each hand.

I worked with him in his lesson and he was absolutely amazing! His handwriting was fantastic and the strength and dexterity in his hands was brilliant. The only things he found hard were pulling his chair in at school and at home, brakes on his bike. He'd worked out ways round not having fingers and I'm sure your little man will too especially if you encourage him to always have a go at everything and not to think he can't try things like other children. And don't worry now about things like bullying... if he is confident and just gets on with it no-one will bully him and the other children will grow up with him and just accept him as he is.

 

[bobekah]

Wow Your story really hit me. I havent been on this bored sense my girls were born (twins) Well twin b was the smaller of the 2 and ended up in the NICU for a month. First thing I noticed about her physically was her fingers are fused together on both hands...her ring finger and her pinky fingers. We didnt see anything threw the pregnancy too! When she was 9 days old the Genetics from Childrens hospital from Seattle came to Alaska and over looked her and said she has a dysplasia. Blood has to be tested but they are about 99 percent sure she has Oculodentodidgital Dysplaisa. She is 1 in 40 in the USA and 1 in 1000 in the world that have this 4
+ 5 Syndactily...She does have a few other things going on that are not related to the dysplasia such as a cyst in her developmental area of her brain...she has boots for her feet not due to clubbed feet but the bone was deformed on her left foot. She has issues with eating/keeping food down and gaining weight. She also has a Hemangioma (big wine colored birth mark) on her left hand, it wraps entirely around her wrist!

I have to wait until January to get her blood work back. It was sent to John Hopkins University here in the US. I wish you all the luck and if you ever need anybody to talk to about the mutation just let me know!

 

[LittlePeanut]

Hi there, my 18 month old was born with an extra little finger on both hands, on the right its more like a skin tag cause it has no bone in it and the left has a bone but its just smaller than her actual pinky. she also has an extra toe on her left foot. also with no bone, we are waiting for sick kids to call us for appointment, she will ahve them removed, but i have delt with people asking questions , i never hid them from people. nobody was ever rude or anything jsut curious, and i tell them what it is.

Was gonig to post a picture but i dont kno how. it looks like the forum options changed.

 

[GLP1987]

Hi
My beautiful little girl was born may 2012 and has the same thing on her right hand. The hand and wrist appears smaller. She is missing digits 3 and 4 and her other three digits are twice the width and 1/4 the length. I would be very interested to see how you going with this as I have not yet even been contacted for an appointment to work out what they are going to do. The genetics department said it was genetic, but are looking into it further as we have no history of it on either side of the family. However apparently 1 in 1000 babies are born with this.
They failed to catch it on my scans as well and true to blame it on the way the baby was lay at first but I sent in a complaint as all my baby's scans are of her right side and they should have picked it up. Which medical negligence and you can sue if you look into it.
I love my little girl to bits and am amazed how well she uses her right hand. From reading your post you seem to be in the same frame of mind as me and I fully understand the bullying fears. I'm lucky enough my sisters little boy will be in the same year so she will have some support from someone who understands it a bit better. If you ever want to chat let me know. I'm eager to meet more children around my daughters age with this so she knows she's not the only one.

 

[bananabump]

Hi, Im really sorry Im only just replying to these posts.. Ive only just seen that I had any replies! Thank you al for you kind words! Leo is 1 next month and he is absolutely AMAZING! I can't believe all the worries I had about him when I wrote this post, his little hand has not held him back in the slightest! He was crawling at 7 months, pulling to stand at 8 months and crusing at 9 months... He uses his hand as if it were totally fine and if he does struggle to pick something too big up then he just uses his other hand as a support! Yes a lot of people stare and some even ask questions or point and whisper... but I don't care because there are also a lot of people who meet him for the first time and all they notice are his gorgeous smile and big blue eyes!!

Bobekah how are your lovely little girls getting on now?

GLP1987, where abouts are you from and how old is your LO?

Here are some recent photos of my Leo cub xxx

 

[drsquid]

my cousins son had the same thing. on his left hand which appeared to be his dominant (looks like the hand is your son's dominant too). that is actually a kinda good thing cuase then they use it more. he is 6 now. crazy dextrous with that hand. can do everything. (he has a thumb and nubbins). and just tells people he was born that way and doesnt get to bothered (though he was super happy to meet my dad who is missing two fingers)

 

[JASMAK]

Wow...his eyes are amazing! What gorgeous little man! So cute how he uses his hand like nothing is different! Yay! Glad he is doing well. x

 

[morri]

Willhelm II the last Kaiser of Germany also had a shortened limb(in this case the whole arm) If you look out for pictures you can see it although he tried to hide it.

 

[proudMoM26]

Hugs for you.
Think positive!! Atleast he is alive and healthy. There are so many reconstructive surgery that he can possibly take if he want to fix his arm/fingers. With your problem regarding bullying, which he will surely experience, this is the biggest part he will need you. He should have a great self-confident. You can try to engage him to different activities where he can be busy and excel, thus he won't even have the time to even think of the persons bullying him.

And at this modern age, physical deformity is not that a big deal to be successful in his chosen field. Just always be there beside him with your love and support,.. he can surpass this trial as long as he knows he have you and your husband's by his side

 

[SilasLove]

I feel very blessed to have come upon this post. I was born with a hand deformity (picture below) and the doctors were never able to give my mother a specific reason why. Growing up i struggled some but i honestly have been known to be acquainted with people for months before they have ever even noticed it.

My deformity has never once gotten in the way of anything i wished to do aside from maybe pull ups or monkey bars in which i am sure i could have figured a way if i had wished enough to. I had surgery at the age of 3 and it was experimental. It was documented and made in to a book and i have actually met a little boy that had a hand nearly identical to mine. I have had times in my life where i wonder why me? Why was i chosen to be different? But honestly i am me and i would never change it.

On the plus side i have had two children who are perfectly normal so if it is genetic it has yet to be proven to me.

I'm 23 and i have only ever been teased once in my life to a point to truly upset me. As for people staring and pointing they are idiots and should never be allowed to influence how your LO feels about himself. He will grow up strong and do all the things he is destined for.

https://i660.photobucket.com/albums/uu323/SilasLove/IMG_20120725_010924.jpg

 

[bananabump]

I feel very blessed to have come upon this post. I was born with a hand deformity (picture below) and the doctors were never able to give my mother a specific reason why. Growing up i struggled some but i honestly have been known to be acquainted with people for months before they have ever even noticed it.

My deformity has never once gotten in the way of anything i wished to do aside from maybe pull ups or monkey bars in which i am sure i could have figured a way if i had wished enough to. I had surgery at the age of 3 and it was experimental. It was documented and made in to a book and i have actually met a little boy that had a hand nearly identical to mine. I have had times in my life where i wonder why me? Why was i chosen to be different? But honestly i am me and i would never change it.

On the plus side i have had two children who are perfectly normal so if it is genetic it has yet to be proven to me.

I'm 23 and i have only ever been teased once in my life to a point to truly upset me. As for people staring and pointing they are idiots and should never be allowed to influence how your LO feels about himself. He will grow up strong and do all the things he is destined for.

https://i660.photobucket.com/albums/uu323/SilasLove/IMG_20120725_010924.jpg

Thank you so much for sharing your story with me! I hope Leo grows up with the same attitude as you!

It's going to be a rollercoaster Im sure, but he's such an amazing little boy that I know nothing will hold him back!

xxx

 

[C_baby]

I am so glad I found this thread. My little boy Ivan was also born with a congenital hand abnormality, as he is only two weeks the true extent is unknown and we are waiting for our next consultant appointment to look at having X-rays etc. She seemed optimistic it may be limited to his hand but I feel there may be forearm involvement judging by how he fits his clothes. He has a significantly smaller right hand with under developed fingers ranging from his little finger which appears fully formed but only a 3rd of the size of left hand finger to his index finger which appears to have no joints and no nail bed. He also has a degree of webbing which he will eventually have plastic surgery for.

I have been told it is definately not ABS, and is unlikely to be related to any other syndrome but just 'one of those things'. However his medical photographs have been sent to a geneticist as they haven't seen anything quite like his hand before.

The last couple of weeks have been a massive rollercoaster, as we also didn't find out until birth. Trying to quickly wrap our heads round our perfect little boy having to deal with this for the rest of his life was overwhelming in the first few days. I cried for hours and blamed myself feeling I'd denied him a 'normal' life. I still worry about how he'll cope physically and emotionally but it is so reassuring to read about other people who are experiencing what we are and proving what I know to be right- that it'll only be a problem if we make it one.

I am very blessed to have such a wonderful beautiful baby and I couldn't imagine him any different.

Thank you for sharing your stories.

X x X

 

[bananabump]

I am so glad I found this thread. My little boy Ivan was also born with a congenital hand abnormality, as he is only two weeks the true extent is unknown and we are waiting for our next consultant appointment to look at having X-rays etc. She seemed optimistic it may be limited to his hand but I feel there may be forearm involvement judging by how he fits his clothes. He has a significantly smaller right hand with under developed fingers ranging from his little finger which appears fully formed but only a 3rd of the size of left hand finger to his index finger which appears to have no joints and no nail bed. He also has a degree of webbing which he will eventually have plastic surgery for.

I have been told it is definately not ABS, and is unlikely to be related to any other syndrome but just 'one of those things'. However his medical photographs have been sent to a geneticist as they haven't seen anything quite like his hand before.

The last couple of weeks have been a massive rollercoaster, as we also didn't find out until birth. Trying to quickly wrap our heads round our perfect little boy having to deal with this for the rest of his life was overwhelming in the first few days. I cried for hours and blamed myself feeling I'd denied him a 'normal' life. I still worry about how he'll cope physically and emotionally but it is so reassuring to read about other people who are experiencing what we are and proving what I know to be right- that it'll only be a problem if we make it one.

I am very blessed to have such a wonderful beautiful baby and I couldn't imagine him any different.

Thank you for sharing your stories.

X x X

Hellooo! I havent been on here for ages so apologies for the delayed reply! Its nice to meet someone else who has obviously been through the same rollercoaster of emotions that I have felt/feel.

How is your little man now? Leo is 16.5 months old and absolute perfection! We had a small operation on his hand just before Christmas to help with functioning and it's healing really nicely.

We also got the all clear from the geneticist that he has no other syndromes or conditions so that was a big weight off our shoulders!

If you habe Facebook then feel free to add me.. Emma Barnett. I'm part of quite a few groups on there to do with hand/arm differences and they're a great help.

Hope to speak to you soon xxx

 

[C_baby]

I am so glad I found this thread. My little boy Ivan was also born with a congenital hand abnormality, as he is only two weeks the true extent is unknown and we are waiting for our next consultant appointment to look at having X-rays etc. She seemed optimistic it may be limited to his hand but I feel there may be forearm involvement judging by how he fits his clothes. He has a significantly smaller right hand with under developed fingers ranging from his little finger which appears fully formed but only a 3rd of the size of left hand finger to his index finger which appears to have no joints and no nail bed. He also has a degree of webbing which he will eventually have plastic surgery for.

I have been told it is definately not ABS, and is unlikely to be related to any other syndrome but just 'one of those things'. However his medical photographs have been sent to a geneticist as they haven't seen anything quite like his hand before.

The last couple of weeks have been a massive rollercoaster, as we also didn't find out until birth. Trying to quickly wrap our heads round our perfect little boy having to deal with this for the rest of his life was overwhelming in the first few days. I cried for hours and blamed myself feeling I'd denied him a 'normal' life. I still worry about how he'll cope physically and emotionally but it is so reassuring to read about other people who are experiencing what we are and proving what I know to be right- that it'll only be a problem if we make it one.

I am very blessed to have such a wonderful beautiful baby and I couldn't imagine him any different.

Thank you for sharing your stories.

X x X

Hellooo! I havent been on here for ages so apologies for the delayed reply! Its nice to meet someone else who has obviously been through the same rollercoaster of emotions that I have felt/feel.

How is your little man now? Leo is 16.5 months old and absolute perfection! We had a small operation on his hand just before Christmas to help with functioning and it's healing really nicely.

We also got the all clear from the geneticist that he has no other syndromes or conditions so that was a big weight off our shoulders!

If you habe Facebook then feel free to add me.. Emma Barnett. I'm part of quite a few groups on there to do with hand/arm differences and they're a great help.

Hope to speak to you soon xxx

Hi Emma,

Sorry I forget to return to this thread!

My LO is now 7 months and doing wonderfully. He uses his hand better than I would have ever expected, he only struggles with large things due to his small grasp.

His condition was confirmed as genetic by the genetics team but as of yet they have found no linked conditions, he is going for heart and kidney scans though this month. We have been submitted to a research trial in order to try and isolate the gene and find if it is dominant or recessive. Which will help us to know the liklihood of Ivan passing this condition on to his own children.

It's been a bit if a whirlwind TBH, he's recently been discharged for the plastics team though so we are getting somewhere!

Glad to hear you LO is doing so well.

Caroline x

 

[stick2000]

Hi, I have no experience of hand abnormalities, but my daughter has cerebal palsy resulting in her having very limited use of her right arm and her right arm is always in a fist. The doctors expect her to not regain any individual movement in her fingers and that her arm will only really be used for support. She does most things one handed, and the therapists say she can do things with one hand that she shouldn't be able to do lol!

 

[sequeena]

:wave: Hi Emma!! Leo is wonderful as always and I know he's doing really well right now. What a fabulous little man you have.

You already know this but for anyone who is going through similar my son was born with pre-axial polydactyly (extra thumb) which also wasn't picked up at scans. It was removed when he was 15 weeks old but the joint hasn't developed as it should so he's been left with hypoplasia. It does interfere with his co-ordination but he's doing very well. Only problem is his thumb is so bendy that he gets it stuck over the top his knuckles often he regularly sees an occupational therapist and a plastic surgeon. His next check up is on August 7th - his 2nd birthday!

Here's a picture of how his thumb looked before;

Now he's minus the thumb but there's an extra bulge on the joint. You really wouldn't notice if you didn't know, the surgeon did an amazing job.