Radial Dysplasia

Sarah - posted on 12/30/2008 ( 27 moms have responded )

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Hi I'm new and wondered if there was anyone out there like us??? My 2 year old has both radius bones missing so his hands are at a right angle to his wrist...he also has shorter arms and less strength in them.



He is a fabulous, brave, hilarious little fighter. He's (we've) been through some tough times, but as (I'm sure this goes for all of you) time has gone on we have learnt so much. Some of which I wish I had known 2 years ago.....please contact me if you want to know anything or just want to chat about your experiences.

Sarah

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Victoria - posted on 06/10/2013

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Hello to everyone. My name is Victoria, I'm 19 years old, and while I do not have a child with radial club hand, I would like to inform you that I am a child with radial club hand. Out of curiosity I looked radial club hand up for probably the millionth time, and I found this site. And honestly it's amazing. I can only imagine how worried and scared many of you are just by how my mom has talked about her mothering experience, but I just want to let you know that everything will be all right. In fact, it'll be amazing. Just be sure to never give allowances for their disability. Help them in any way they absolutely need it though. For example, My mom made me audition for a play called A Laura Ingalls Wilder Christmas at our local college when I was in sixth grade. Not only did I make it in, I got Laura, the lead. I've now been apart of theater in every aspect for eight years now, and I just finished my freshmen year in college where I am majoring in theater. I've written a play that got a public reading, and I was asked to stage manage a production this year. However, I needed help from someone just to put my hair in a ponytail until this year. There will be many things that will be difficult, but encourage them to find another way to do it. They can do anything they set their minds to if you encourage them to do so. However, there is going to be bullying and lots of it. There will be days that they will come home from school crying, but just make sure to tell them they are loved, and that no matter what, they can't listen to them. I had a person (a forty year old man) come up to me after a performance two years ago and say, "I can't believe they let a freak like you on stage." Yes. It stung. But I turned to him and said, "I'm so sorry for you. What a sad life you must lead in order for you to say that to someone." And it's true. They are sad. However, every child/person I've met with this or any other disability have been the most strong and amazing people I've met. You learn how to care for people better. You become a kind person through it all. I was having a conversation with my boyfriend the other day, and he asked me the question that everybody asks eventually, "Do you wish you'd been born with a regular hand?" And I had my answer already because I had discovered this a while back. Superficially, yes of course. But, when I looked deeper, I realized that everything that happened in my life, including all of the bad led me to be the person I am today. With wonderful friends and family, a bright future in a wonderful college, and a wonderful boyfriend who I'm desperately in love with and he feels the same for me. Would it be nice to have two normal hands? Yes. But would I do a do-over if a genie could grant it to me? Never.

Cindy - posted on 04/20/2013

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Hi my son is like yours and we have found ways to do lots of things... I started having fabric loops sewed on to the sides of his pants when he was 3 they help with the pulling up....sometimes the pulling down is more trouble depending on how tight they fit. when he started to color he was just using the ring and pinkie finger so there was no stability...he holds his colors and pencils by setting the pencil in the bend of the wrist then holds between the pinky and ring finger... he writes and colors very well, when we started to color he broke every crayon in 5 boxes because he was using too much pressure but, in time he got it all just right.. God Bless you!

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Steve N Lindsey - posted on 03/06/2014

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My son in 29 months and we have started potty training. he does an awesome job with it but I leave him camando during the day. Anytime I have put underwear on him he has ended up pottying in his underwear. I wasn't understanding this till tonight I realized that diapers he can get off cause of the Velcro but with his radial club hand its harder for him to pull down his underwear from where they are tighter on him.. I saw on here the fabric loop idea and wondered how well it works or if anyone has tried Velcro?

Nikia - posted on 02/24/2014

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Hello. As an occupational therapist who works with a fantastic little boy with radial dysplasia, I have found this website helpful and informative. If anyone can provide more information on the fabric loops sewn onto the side of pants to help with pulling up, it would be helpful. Please let me know if straight material or metal rings were added and which method your children have found most helpful. Thanks!

Steven - posted on 09/28/2013

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im sorry moms on here, but its the only active forum i have found, im 20 in december and i have the same "handicap" ive achieved my GCSE's and have been to college, my hands have never stopped me from doing anything i have wanted to do, im just like every other 20 year old, been in a 3 year relationship recently finished...play video games.

ive had A LOT of operations growing up, from kessler frames, to index finger to thumb procedure. just wanting to know, has anyone inherited the radial dysplasia? just want to know if theres a chance my children could get it?

Kayleigh - posted on 08/11/2013

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I have radial dysplasia. I'm 26 and a married mother of 3 small children. Once the ops stop. It gets easier :) xxx

Cindy - posted on 04/21/2013

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Hi Deb...I must say that being pregnant with my son was totally stressful...I dreaded every visit to the Doctors office, so my heart goes out to you.
I have never heard of iugr, I did not know about the esophagus and stomach or about his heart until the day he was born, he had surgery at one day old,thank goodness I was still a little out of it and on lots of pain meds during the process, my husband signed the papers and stayed by his side until my epidual wore off and I could feel my feet. That's when my husband said he knew my son knew his voice above anyone else in the room...He was born 6 weeks early, he was the biggest baby in the NICU a whopper at 4lb 15 ounces....a lot of the babies in the NICU were about 2lb He was in the hospital 30 days...and the nurses were wonderful,helping us with our confidence and every milestone meet was celebrated. we did it all feeding breast and bottle changing diapers bath time in a little foot tub, very sweet, dressing him up in little preemie outfits we had bought at walmart, it was a faithful blessed time.
God Bless You ...have you stated to decide on a name?

Deb - posted on 04/20/2013

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Cindy Ray, did the doctors indicate he had iugr? In my check up my Dr indicated her limbs are all 2 weeks behind. That the nutrients are going to the brain. I know I wasn't told this at my 20 week ultrasound which focused on the radial bone and heart concerns. Now I'm wondering if there is more obstacles we may be facing. I feel like everytime I go in its more bad news. Did you know before he was born about the stomach and esophagus not being attached? Was he born early/ underweight? Thanks

Cindy - posted on 04/09/2013

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I want to keep in touch with you also...Even though everyone is different if you have any questions.. or just need to let some of it out I will be your friend. We live in Texas.
A funny thing when I was pregnant my husband would call every day at lunch to talk to my son, he insisted I put the phone to my belly and he would talk really loud through the phone....and also in person he would put his mouth to my belly and say stuff like hey son how is it going today and that he was waiting to meet him and of course he loved him, When my son was born...Iam certain that he knew his Dads voice as well as he knew mine..
Very Sweet! Write to ya soon...keep the FAITH!

Deb - posted on 04/09/2013

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To Cindy Ray- thank you for posting. I wasn't sure if this board was active. I felt so strongly We needed to connect with other people going through the same things. We definitely want to keep her and are hoping for the best at my 23 week appt when they can check her heart and kidneys. Ill post how it goes. I find some comfort in knowing things have worked out so well given your circumstances. It's hard with all the thoughts in my head being up against so many unknowns. Your son sounds wonderful and I find such inspiration in his and your journey. I feel that my Lil girl will be a fighter too. I hope to keep in touch with you.

Cindy - posted on 04/09/2013

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To Deb..... Iam so thankful I went through with having my son he is 6 years old now he is in1st grade he is in the honor gifted and talented A honor roll class room He reads on a 4th grade level he is excellent in math...he is funny( loves knock knock jokes} when was born he had a lot of issues including VSD a heart condition.plus several others he is missings the radilal bone in both arms an has no thumbs, he feeds his self he brushes his teeth he can write and color so well that we did not even qualify for occupational therapy
in the school district. The only thing he can not do is reach his bottom to wipe, however I do not mind being the wiper and at school the nurse is in charge of that task...Iam one happy mommy and I hope you will be too...Congrats on being pregnant. May God Bless you!

Cindy - posted on 04/09/2013

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My son is missing both radial bones and has no thumbs.... We decided on no surgery and he is doing well..When I was pregnant we knew there were problems but not to what extent, I was sent to a high risk pergnacy doctor who wanted to draw fluid from my pregnant belly..my husband and I decided not to do the test for fear of more complications than we were already up against...long story shortened my sons stomach and esophagus were not attached when he was born he had major surgery when he was one day old....We went through a lot and for a situation that looked so scary and bad, I must say one step at a time here we are happy proud inspired some things only time will give you the awnser too. So from experience I will say I worried about a lot of things that turned out better than fine they are turning out GREAT..try to not worry...

Deb - posted on 04/08/2013

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I'm 19 weeks along and we now have confirmation that our Lil girl is missing the thumb and radial bone on her right arm. Drs are now concerned she may have a heart condition and kidney problems. We won't know more until my next appt when she's bigger and they can check. Has anyone had their newborn go through heart surgery? Has anyone elected the arm surgery to create the thumb? I'm just so scared with all the possibilities and that drs ask me if we want to continue with our baby.

Cindy - posted on 03/10/2013

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Hi My son was born missing both radial bones..hands are turned at 90 degrees 4 fingers on left hand and 3 1/2 on the left....He is 6 now, very smart top of his class A honor roll every 6 weeks so far....we decided not to do surgery when he was younger, and so far we are happy with our choice, he writes and colors well, and does most things he needs too. still not much luck with blue jean buttons and zippers..with hope and time I think he will get there...I just found this circle of moms and thought I would hop in....Most post seem older..but I will keep checking back. Thanks Cindy

Cherne - posted on 01/10/2013

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Hello
My grandson was born with his right hand as a radial club hand. He is now just over 2 months old and we are looking at talking to other parents who have experiances with this symptom and guide us with their learings. We are based in Johannesburg South Africa.
Regards, Cherne`
ccullen@iafrica.com 0828952733

Yakirasudler - posted on 10/28/2012

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hello my name is yakira and im 29weeks pregnant and they have told me my lil girl has a real dense radius bone n missing three lowe digits fingers but that she has the thumb and indexfinger and i just want some more info on dealing with it or like am i the only one which i have three other boys who are prefectly healthy and just want a bit of insite.

Sarah - posted on 02/20/2012

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Yes, keep in touch:)



About explaining things to him, it will happen slowly. Christopher knows he is different to other children but not in a bad way. His friends in nursery count his fingers all the time and talk about it, but again, not in a bad way.



He was, for a while in an American nursery and his hands where very focused upon bý his classmates. Since we moved back to Denmark, his classmates, didn't even seem to notice his hands until about 2 weeks of him being there. I think different people deal with it differently. Having a very visable disability certainly weeds out the people that you don't want to be friends with....that's a good thing:)



I tried once to explain to some of his classmates why his hands looked different....every week they would ask me the same question and I would try to explain. Eventually, I said, he was just born like that....oh I see they said, and never asked again....so, keep it simple when you do explain;)



All the best, and good luck this week. It all very daunting early on....of course, the operations are difficult to get through....but things get easier as you see them managing to do things just like everyone else, just a little later and in their own style.

Sarah

Claire - posted on 02/20/2012

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Hi Sarah,

Thanks so much for your reply and information. We have Harry's next appointment tomorrow morning with the Genetics at the childrens hospital and then we meet with the surgeons again on Thursday to go over all our questions. They advised us at his first appointment in November that they would not perform first operation being the pollicization on left hand until he is around 1 year old. My husband Grant and I want the best for Harry, so although very shocked and upset at first, we have decided it is best that Harry has the best use of his hands as possible so will be going ahead with the surgery. At this stage they have advised that it is only his thumbs that have been affected but we are getting further x-ray's tomorrow morning to check on this and make sure.

Christopher sounds like a brave little boy and I am glad to hear he is doing well. We as parents do worry so much about them but they are so brave and I guess just learn to do things with what they have, I guess the good thing about it being done when they are so young is that they won't know any different. I worry also about how to answer all of Harry's questions when is is older and also on how to teach him to deal with other childrens reactions to him being different, I guess we just have to bring him up to be a confident little boy so that other childrens comments don't affect him.

I will let you know how I get on with all Harry's appointments this week.

Claire

Sarah - posted on 02/17/2012

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Hi Claire,



Christopher started his operations at 6 months. He finished when he was 3 years old. We tried originally to get through them as quickly as possible, but there is a lot to be said for taking the time that is needed, and also allowing them time inbetween operations to develop as normal.

Christopher had both thumbs removed as they were not functioning and also tended to get in the way as he was unable to move them out of the way. On his right hand he has a thumb made form his index finger, but still prefers to use his little finger/ring finger grip for fine controlled movements and uses his thumb only for biger objects. On his left hand he doens't have a thumb at all and he manages with his scissor grips between his fingers. Anything that increases their function is a good thing, but each procedure that he has undergone has had varying levels of success. Some very successful, some not at all. It was impossible to know which was going to work well before the operation.

What I can tell you is that he has foudn his own ways of doing things. At 5 he is beginning to undress and dress himself. He holds a pencil etc. but of course with less control than his peers. He can use scissors better than some of his peers. He can hammer nails into wood, use a spoon, knife, fork....he just does it differently to others and often takes longer to learn how to find a way around a problem.

What I didn't realise before we started on the whole operation process was that there was a lot of recovery time in between, where he had his arm in plaster or in braces. This was hard for him when he should have been crawling, climbing, running around, learning to talk etc. We were careful to have lots of rest periods inbetween, so he could gain strength and be a child and so we could gain strength to get through the next operation....that's why it took longer, but I don't regret that.

What I didn't realise to before the operations started was that no matter how difficult the operation is, it is over quite quickly, the healing time and after care is what is really hard work. Make sure you have loads of support around you....people to take him out for walks while you sleep and recharge your batteries.....you need loads of energy reserves.

Good luck. Whatever decision you make it will be the right one for your son....you're his parents, you know (if you listen to your hearts) what he needs.

Contact me anytime you need any support etc.

All the best for Harry,

Sarah

Claire - posted on 02/16/2012

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Hi,

My name is Claire and I have just joined as my son Harry has Radial Dysplasia in both his right and left thumbs, with the left being the worse. He is now 5 months old and we have only had the one appointment with the Childrens Hospital in Australia at this stage. They told us that they will need to remove his left thumb and turn his index finger into a thumb so that he has full use of his hand. We have our follow up appointments next week so I have been resarching as much as possible to see if there are any alternatives out there to removing the thumb.

As I see you posted this a few years ago, I was wondering how your children are all going and whether you went ahead with any operations, how they have recovered and at what age they were when they had procedures? Looking forward to your responses.

Claire

Michele - posted on 01/01/2010

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Hi Sarah,
How are you and how is your son? I have been offline but am back on line now.
I would love to chat to you regarding surgery etc as Dominic is almost 4 now and is asking us to "fix" his hand. I have been in contact with Dr Dror Paley and am now exploring all options. It is quite a task as I am in South Africa and we will have to raise the funds to do what is necessary.
Thank you for answering my first mail. I am new at this whole chat thing and am not even sure if I am doing this right.
Best wishes for 2010 I do beleive it is going to be a great year!

Regards
Michele

Regards

Michele - posted on 01/01/2010

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Quoting Sarah:



Quoting Michele:




Quoting Sarah:

Radial Dysplasia

Hi I'm new and wondered if there was anyone out there like us??? My 2 year old has both radius bones missing so his hands are at a right angle to his wrist...he also has shorter arms and less strength in them.

He is a fabulous, brave, hilarious little fighter. He's (we've) been through some tough times, but as (I'm sure this goes for all of you) time has gone on we have learnt so much. Some of which I wish I had known 2 years ago.....please contact me if you want to know anything or just want to chat about your experiences.
Sarah







Hi, my 3 yr old  is missing his radius and thumb on the left hand.








We have decided not to operate, I'd love to chat to you.








Michele






 






Hi Michelle,






I'm not sure to answer these mails....so excuse me if the taxt is all over the place. Please feel free to chat away at any time with me.






It is a difficult decision to make whether or not to operate. To begin with, we wanted Christopher to be as "normal" as possible. Now we are more realistic and want to improve his function as much as possible without changing his naturally sunny personality too much. We have gone ahead with all the recommended surgery on his right hand (this was 3 procedures, but we have sine found out we could have skipped the first-and probably worst-procedure). With his left hand we will do one procedure for now which will prevent his hand from bending in too much and give his greater stability in the wrist........but we think we will see then how he develops over time. GIve him a good long time to get used to using what he has.






After the first 6 months of operations, which was basically non-stop surgery, casting and all the problems that go with that, we decided that we needed to have big breaks between each procedure for the sanilty of us and also our little boy.






Anyway, any way I can support or help you, please let me know:)






Take care,






Sarah









 





 

Sarah - posted on 04/25/2009

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Quoting Stephanie:



My son is missing the ulna in his arms, and some fingers on each hand...He is currently seven years old - it sounds like we may have some common issues???






 






~ Stephanie






HI Stephanie,



Our sons hands pull inwards at a right angle, does your sons hands pull outwards? How is his hand function now? I am amazed at how Christopher adapts to do things with his hands. He has started painting and drawing and even trying to cut paper (of course with lots of help from me). How does your son manage in school?



What operations has he undergone?



Does he have shorter arms? If so, how has this been a problem for him.....how have you helped him to overcome them?



Sorry, so many questions, but I'm intrigued to know what I might be able to expect when Christopher is 7. I hear from others that children adapt to whatever they have, but of course I worry about so many things. Will he be able to write, use a computer (even wipe his bum and hold his willy when he pees.....sorry, but we worry about these things don't we)????



Does your son have any other problems? Christopher as a few, but mainly at his age (2 1/2) we just have to wait and see:)



I'd love to hear back from you,



Sarah

Sarah - posted on 04/25/2009

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Quoting Michele:



Quoting Sarah:

Radial Dysplasia

Hi I'm new and wondered if there was anyone out there like us??? My 2 year old has both radius bones missing so his hands are at a right angle to his wrist...he also has shorter arms and less strength in them.

He is a fabulous, brave, hilarious little fighter. He's (we've) been through some tough times, but as (I'm sure this goes for all of you) time has gone on we have learnt so much. Some of which I wish I had known 2 years ago.....please contact me if you want to know anything or just want to chat about your experiences.
Sarah





Hi, my 3 yr old  is missing his radius and thumb on the left hand.






We have decided not to operate, I'd love to chat to you.






Michele



 



Hi Michelle,



I'm not sure to answer these mails....so excuse me if the taxt is all over the place. Please feel free to chat away at any time with me.



It is a difficult decision to make whether or not to operate. To begin with, we wanted Christopher to be as "normal" as possible. Now we are more realistic and want to improve his function as much as possible without changing his naturally sunny personality too much. We have gone ahead with all the recommended surgery on his right hand (this was 3 procedures, but we have sine found out we could have skipped the first-and probably worst-procedure). With his left hand we will do one procedure for now which will prevent his hand from bending in too much and give his greater stability in the wrist........but we think we will see then how he develops over time. GIve him a good long time to get used to using what he has.



After the first 6 months of operations, which was basically non-stop surgery, casting and all the problems that go with that, we decided that we needed to have big breaks between each procedure for the sanilty of us and also our little boy.



Anyway, any way I can support or help you, please let me know:)



Take care,



Sarah





 

Sarah - posted on 04/25/2009

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Quoting Melissa:

My son has radial dysplasia too, but not to the extent of your son. He has a shortened right radius and hypoplastic left and right thumbs. His left thumb will be pollicized in June and his right thumb was have a tendon transfer and reconstruction this time next year. He also has VACTERLS Association.



Hi,



My son also has some of the VACTERLS Association too. He has some mis-shappen vertebrae, only one kidney, a very small hole in his heart and a soft trachea......so far, though, these don't seem to be big issues with him, so we mainly concentrate on his hands.



Does your son have other severe problems retated to Vacterls? There is a forum to meet others, do you know about it?



Christopher will have the muscle and tendon transfer on his second wrist this summer. With Christopher, although the operating time was very long for the pollicization, he recovered very quickly. He still prefers to use his finger pincher hold....but is gaining strength in his thumb grip now (he had the operation done in August last year) Please let me know if you have any questions:)



Take care and give your brave little boy a big hug,



Sarah

Stephanie - posted on 04/02/2009

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My son is missing the ulna in his arms, and some fingers on each hand...He is currently seven years old - it sounds like we may have some common issues???



 



~ Stephanie

Michele - posted on 03/19/2009

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Quoting Sarah:

Radial Dysplasia

Hi I'm new and wondered if there was anyone out there like us??? My 2 year old has both radius bones missing so his hands are at a right angle to his wrist...he also has shorter arms and less strength in them.

He is a fabulous, brave, hilarious little fighter. He's (we've) been through some tough times, but as (I'm sure this goes for all of you) time has gone on we have learnt so much. Some of which I wish I had known 2 years ago.....please contact me if you want to know anything or just want to chat about your experiences.
Sarah


Hi, my 3 yr old  is missing his radius and thumb on the left hand.



We have decided not to operate, I'd love to chat to you.



Michele

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