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Symbrachydactyly: My Experience with Short Fingers and a Normal Thumb

I was born with symbrachydactyly. I have short fingers and a normal thumb. Living with this condition hasn't slowed me down at all.

Born With Short Fingers

The moment when your first child is born is a life-altering moment in any parent's life. When I was born, in the mid-1950s, there was no ultrasound test. So, the first thing people wanted to know about a new baby was: is it a boy or a girl?

Once the sex was determined, they checked to see that everything was in place. With all limbs accounted for, it was time to move on the fingers and toes count. I did not pass this test. I still wince a little when I hear people say of their perfect new baby, "he has all of his fingers and toes."

Palm of sym hand showing tiny fingernails

Palm of sym hand showing tiny fingernails

They Are Only Fingers

It was just a little thing; I actually have all of my toes. It's just that the four fingers on my right hand are short—ending just about where the first knuckle would be, the thumb is perfectly normal.

As physical handicaps go, it's not much to complain about. However, it was alarming for my parents at the time. They took me to many doctors and specialists in the first couple of years of my life.

At that time, the only thing the specialist told them was that it was a congenital amputation. The only treatment he could offer was a surgery that was just cosmetic.

They could lengthen the fingers so they would appear more normal, but surgery would damage the nerves, making my hand less useful than it already was. Being loving and intelligent parents, they chose to leave it alone.

My hand actually works fine, I can perform most normal tasks, and I type 50 wpm, a perfectly adequate speed.

Dealing With Other People is the Worst Part

The greatest impact my short fingers had on my life was social. Before I started school, I was not self-conscious about it at all. I would even tell people, "I have a tiny hand."

Once I started school though, I found that kids would stare, and many of them avoided me as though it were contagious. They would get used to it after a while, and the reactions became less pronounced.

Each fall when school started again I would have to repeat the process. I think all of this made me more of an introvert than I otherwise would have been, and I began to hide my hand in my pocket when meeting new people.

Sad little girl

Sad little girl

What Is Symbrachydactyly?

In my life, I have never met anybody else that had this condition. I have never consulted a doctor about it; after all, it is what it is.

Physicians I have gone to for other reasons have been more curious than anything, but they have not had much information to offer me. It is only because of the Internet that I have learned anything more about it at all.

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My own self-diagnosis is that I have symbrachydactyly, a congenital hand malformation that occurs in 1 in 32,000 births. In most cases, only one hand is affected.

The cause is unknown, but scientists think that it may be due to an interruption in blood flow to the fingers of the fetus during the first weeks of pregnancy. That is when the paddle-like structures on the arms of the fetus are dividing into fingers. There is no known way that the mother can cause her child to have symbrachydactyly, and no way she can prevent it.

Symbrachydactyly is not genetic, so it does not run in families. I know that no one else in my family has it. I have three children, all with normal hands.

It seems that my case is mild, as I do have usable fingers. In some cases, there are no fingers at all. Sometimes there are tiny nubs where the fingers would have been. Sometimes, the fingers are conjoined or have webbing between them. I did not have that. Some babies with symbrachydactyly are born with part of their arm missing, and they may have tiny fingers or nubs on the end of the arm.

What About Surgery?

Surgery has advanced since I was a baby; children born with symbrachydactyly are often treated with surgery. If they have short fingers, the fingers can be stretched. Sometimes a toe will be transplanted to the hand to provide a finger for the thumb to pinch with.

I have mixed feeling about surgical treatment. My gut feeling is that, if possible, something permanent like surgery should be postponed, at least until you can see how the child functions with the hand he has.

I have heard a few horror stories from people who had surgery as kids. There can be complications. Dislocated joints in the fabricated digits can cause lifelong pain, repeated follow-up surgery, and arthritis. Also there can be pain in feet that bones have been harvested from. Perfectly good feet, destroyed to make hands that are less useful than they would have been if left alone.

I am sure it is a very difficult situation for any parent to be faced with, but once surgery is done the hand can never be put back the way it was, and toes are important too.

In addition, I would strongly discourage the removal of finger nubs. I think many people choose to do it because they are uncomfortable with how the nubs look. That is not a good reason to have surgery performed on your baby. Doctors and parents often say they are concerned that the nubs will get caught on things. I am afraid that reason could be used as an excuse.

Take your time and ask your physician what the disadvantage would be if you waited, do not rush into surgery. Ask for information about how previous patients are doing, and if they are followed throughout life. Do they require multiple surgeries? Do their hands cause them pain?

I am not at all saying that no child with symbrachydactyly should ever have surgery. I just think that parents may feel like there's something wrong with their baby and they need to "fix it" right away. Don't rush into something that can't be undone.

The child's hand will never be completely "normal." The options should be carefully weighed since the child cannot speak for himself, and he's the one who will have to live with the result.

Even if nothing is done, just like other people with limb differences, your child will adjust to whatever he has. Symbrachydactyly is not physically painful for the child. There's no reason a kid with symbracydactyly cannot do anything he wants to do, and have a perfectly normal and happy life.

This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.

© 2012 Sherry Hewins

Comments

Sherry Hewins (author) from Sierra Foothills, CA on June 15, 2020:

Hi Lizzie, I think that school experience is one we share with a lot of other kids who are "different." I hope you have put all that behind you now, and are doing well in your life.

Lizzie on June 14, 2020:

Hi Sherry The school part is very relatable for me I would always get asked "was your hand bitten off by a shark" it got very annoying at some point also the information you gave is very accurate to my knowledge

Sherry Hewins (author) from Sierra Foothills, CA on January 09, 2020:

Audrey, it does sound like you have a more severe case than mine. I bet you get along in life just fine with the hands you have though. As I said, it's the social part that's hard. Sorry to hear that children have not evolved since I was one.

Now that you are an adult, I hope it will be less of a problem for you. At least most adults are past teasing someone because of their physical attributes.

I didn't have to worry about posting a ring photo online since online didn't exist when I got married. I'd say, just post a nice photo of the two of you and announce that you're engaged. Most people who know you will be aware of your hands.

I've seen where some people tattoo a ring. I think it would be fine to wear a ring on a chain around your neck. Whatever feels good to you.

I hope you find good friends and surround yourself with people who love and accept you for who you are.

Have you checked out the Helping Hands page on FaceBook?

https://www.facebook.com/groups/21843487131/

Audrey on January 08, 2020:

Hi Sherry! It was awesome reasking your article. I'm not sure if my situation is the same because I can hardly find any cases like mine. Of my two hands and then fingers, five of them are nubbed Shortly after the first joint. On my left hand it's my index, middle, and ring finger. On my right hand it's my middle and ring finger. So I basically don't have the last joint, nails, and finger tips. My nubs all differ in size. I really resonates with your words. I got teased A LOT is school and it definitely made me an introvert. Every year on the first day of school In elementary I cried because I was teased. I've always wanted to play piano but my hands definitely steered me away from the idea. It was hard to make friends. I always hated when that was the first thing that people asked me. I didn't know that so many people had this. I'm 25 now and I still have issues dealing with this. I'm still unsure of what I'm going to do when I get engaged. Hand photos showing off my ring is a no go for me. I'm happy to read the comments and see that some people have gotten passed it but I don't think I'm there yet.

Sherry Hewins (author) from Sierra Foothills, CA on December 07, 2019:

Hello Jose, I always appreciate a comment, and you should feel free to share anything you like here. I don't always reply this quickly though.

You might want to try the facebook group https://www.facebook.com/groups/21843487131/ There are lots of parents of kids with sym, but also some members who have it themselves.

I'm sure someone would have advice on getting a glove to help with your weightlifting. People are always asking advice about prosthetics and helpful modifications.

Jose2018 on December 06, 2019:

My name is Jose and I don’t know if anyone will answer this but it’s worth a shot I guess. I was born with a mild case you could say my left hand is missing a finger and I have two nubs or that’s what people called them, I am 18 and read the article as I was just interested because I have never meet anyone else like me but then this article caught my attention. I read a bunch of other comments and began to tear up because that’s how I felt, scared and had few friends as a kid and would always hide it by shoving my hands in my pocket but to this day I still do that. But as I got older I tried to not let it hold me down that’s why just last year I started weight lifting and in the beginning it was hard and I almost gave up because it hurt my hand that at one point tried emailing a company about getting a glove made for my left hand lol but sadly never got a response back so I just kept going without one and now I can say I feel so much better about myself and made so many friends. Hopefully I have not annoyed anyone I just wanted to share my story because I can’t tell my parents this stuff because it breaks my moms heart because she blames herself but I have always wanted to talk to someone about it. Thank you

Sherry Hewins (author) from Sierra Foothills, CA on September 12, 2017:

Anonymous finn - I'm sorry you're having such a hard time. It's hard for me to picture your hand and arm from your description, but I assume it's pretty obvious.

One thing my own experience showed me is that things get better when you become an adult. I hope this will be true for you also.

The experience of being an outcast as a child can have a detrimental effect on a person's personality and self esteem. That can make socializing harder too. If you don't approach people with confidence, it can put them off. I think I still suffer from some of those effects, even though I am now 61 years old.

I did get married and have children. I have worked most of my life. I am a bit of an introvert, but I blame that mostly on my personality more than on my physical appearance.

As far as dating goes, I'd say try to develop friendships with people first. Once a woman gets to know you, your limb difference will be less of an issue. Find people of both sexes who are interested in the things you are interested in, then let things develop naturally. You will notice when someone starts to have feelings for you.

I recognize that there is more pressure on you as a male. You are the one expected to make the advances. Still, I'd say just look for the signs.

Best of luck to you, and I hope you see this message. I'm sorry I missed your comment for so long.

Anonymous finn on September 03, 2017:

I've apparently got this thing... well, im 18yo Finnish dude, living in anti-social country its pretty fucking hard for me to even speak to opposite sex... i mean, like last 10 times i've tried to get a date, its ruined because of my hand... yes i've got 1 and 2x of 1/2 fingers on my left arm... what the fuck should i do? I cant live alone my whole life... also i've been shit talked ALOT in my city because of my appearence... well, atleast i got few friends :/

Sherry Hewins (author) from Sierra Foothills, CA on July 14, 2017:

Gabby, I'd tell the instructor the same thing you tell anybody else. If your syndrome is obvious, then you will have to explain. My condition does not affect my driving, and I don't think the person who administered my driving test even noticed it.

Gabby on June 22, 2017:

Hi,

I have this as part of a bigger disability, Poland's syndrome, and I'm starting to look into driving lessons, any suggestions about how to explain it to the instructors??

Sherry Hewins (author) from Sierra Foothills, CA on June 02, 2017:

Priscilla, thanks so much for your comment. I am sorry your classmates treated you that way! It sounds like you are well on your way to becoming a strong and confident young woman. The future is wide open for you. There is no reason for you not to go after whatever you want in life.

Priscilla St on June 02, 2017:

I'm a fourteen year old girl born with a mild Symbrachydactyly. My parents are quite hard people to get answers off so I do not know what they wanted to do when they first found out about my condition, I do reckon they wanted to act straight away considering the fact that they are both perfectionists.

Growing up was so hard. At first I was a shy and unable to talk to people about it, later on i began to open up to my class but as soon as I did, Things just went downhill. People reacted to my hands like it was a horror film. I lost friends and just people in general because they began to think they were contagious. The kids in school even created a game in which I was always on, 24/7 (so even outside school) called "Green Fingers" in which I would run after people and attempt to catch them with my 'infected' left hand. It was so horrible, this all happened before I the age of 12. Of course, this made me hate myself and question everything. Did my parents even love me? Did this mean I was ugly? I talked to a doctor which was pointless but hey at least I got the chance to blurt out my fake hand cover up-which they laughed at me for(3 doctors). So I also did my own research on it. I was so discouraged and scared before but now I really know what it means to be different. Its my gift because now due to all the things I have been through I have really became strong and independent. Whenever people ask about my hands I would attempt to demonstrate that I can be normal by picking up a pen. I am normal but in my own unique way. Your blog also gives me a reason to keep on going because you and all the people underneath have survived every obstacle and are now at the point of living a successful life, graduating and even having your very own children. I hope to live to these very much open possibilities. I choose to take every opportunity. Because I can, I'm a human being just like every other person on this world. I would also like to try to talk to parents about their kids so called condition. Take it in as their very first lesson in life. It teaches them what being unique means. It teaches them to be strong. It teaches them to become fearless and open people who are never afraid. They may have limitations but not too many that it is hard for them to live. Your role as parents are to help them. If they come back from school crying because they were teased, tell them to go back to school the next day with their beautiful hands and teach the class what is true beauty. What is you may ask? Their unique and REAL hands. Build their confidence before they even enter school. Dont make them walk or run through reality, make them skip. Life will always get easier. Somewhere. Love and Appreciate every bit of life with them. Thats one thing I never got from my parents being the busiest parents alive, but you can do it.

I'm sorry for the long perspective but I just really wanted to say that being that talkative 14 year old I am! Your too inspiring!

Sherry Hewins (author) from Sierra Foothills, CA on June 01, 2017:

Tamara, Congratulations on the birth of your son. At 16 months, my guess is that he is surprising you with how well he uses the affected hand. At four years you should have a pretty good idea of whether he needs surgery. That sounds like a very reasonable approach. Best of luck to you and your family.

Tamara on May 31, 2017:

My 16 month old son has symbrachydactyly and he is missing all 4 of his fingers on his left hand. Our specialist said that we can either leave everything alone or have surgery when he's 4. I've been looking up as much information as possible. My inclination is to leave him alone, but if we could increase his functionality by a large amount, I'd like to at least consider surgery.

Thank you for sharing your experience. My husband and I don't consider his symbrachydactyly to be a huge deal, but we are concerned about future social issues and how he will manage various tasks. It's helpful to hear from people navigating similar waters.

Sherry Hewins (author) from Sierra Foothills, CA on May 29, 2017:

Hi Janet. I think it will get easier now that you are an adult. It's hard for kids to be different. I usually don't mention it unless I notice them looking. Then I will bring it up.

Janet on May 28, 2017:

Hi Sherry I also have the same condition in my left hand though , I'm 19 years old and to be honest your right the hardest thing is when it comes to socializing , I don't really tell people unless they ask and always hide my hand, it has made me insecure about myself because I'm just scared of what people might say to me . How have you dealt with it and do you just tell people when you meet them or to you wait for them to ask.

Sherry Hewins (author) from Sierra Foothills, CA on May 11, 2017:

Lynne, I am sorry you are struggling with people's reaction to your hand. You didn't say how old you are or where you are from.

I feel like I have gained empowerment as I have grown older. It's harder when you're a child. Kids can be mean.

People are naturally curious, and they have probably not seen a hand like yours. It's hard for them not to stare.

I disarm the situation by offering them a closer look. Once their curiosity is satisfied, and their questions are answered, most people can move on.

lynne on March 10, 2017:

Hello,

Very nice article.

I have Symbrachydactyly in my left hand. I used to think it was caused by Amniotic Band Syndrome.

It is difficult looking different...each new group brings along a potential for being hurt. Its unfortunate that there are not workshops that people who look different can take to learn techniques to gain some empowerment in social situations.

Its not the physical difference that is the problem. Its the socializing problems...comments, stares etc....which are dehumanizing.

Sherry Hewins (author) from Sierra Foothills, CA on March 04, 2017:

Skogkatt,

Hey friend. You are certainly not alone! I still have not met anybody with this face to face, but thanks to the Internet I have "met" many people.

I hope the ability for parents to connect and learn and in turn for their kids to connect, will make life better for the next generation.

Skogkatt on March 04, 2017:

Dear Sherry,

Thank you very much for your article. I was also born - 45 years ago - with symbrachydactyly (actually, I didn't know it was called this way) and like you I also found out very soon that the greatest impact of my hand would be social, not physical. I became quite introvert and shy, something I'm still struggling with today. Pockets were and still are my best friends.

However, being a very active person I think I've finally managed to realize just how much I can do with my "little hand" and this has given me a lot of strength.

As a kid I never met anyone with my difference, but now I'm discovering a whole world of people who share the same feature and it's giving me courage. Finally, I'm not alone anymore!

Sherry Hewins (author) from Sierra Foothills, CA on January 16, 2017:

You are very welcome Valerie. I have no doubt that you love your child. I am also confident that she will do just fine. I hope your husband is feeling better about things by now. I'm sure that it was a shock at the beginning.

Valerie on January 14, 2017:

Thanks for writing back and pointing to me that Facebook group which I requested to join. I just want to let you know I lovvvvveeeee my daughter to death and is over protected of her and might even get very sensitive when people will stare or make fun or try to oh belive me i would be the one to snap back. I love her just the way she is and I want everyone else to accept her just the way she is . I'm glad I came across your blog and is grateful for your pictures only because it gives me an idea how my babies will look . I'm glad your very strong and confident about your condition and I will keep your story in memory forever and give my daughter the same strength you have so she can be as strong as you when she grows up. Thanks you

RTalloni on January 13, 2017:

Thank you for sharing your story for the benefit of others. Clearly, some people desperately need to know about your experience so they can take heart from it, and then there are those who need to learn more about the condition so they can understand it and even teach others about it. Some friends of ours have a son with this condition. Growing up in a large, loving family he was always encouraged to go forward normally. Indeed, he has done just that. I hope he is able to help others as you have by telling his story one day.

Sherry Hewins (author) from Sierra Foothills, CA on January 13, 2017:

Valerie - I'm sorry you're having such a hard time with this. Some people may treat your child differently because of her hand, but you don't have to be one of them. Love her the same as you would if she had a normal hand. Don't feel sorry for her, she doesn't need it. You don't need a better baby; I'm sure she's wonderful just the way she is. You might check out this FaceBook page, it is a support group for parents like you.

https://www.facebook.com/groups/21843487131/

Valerie on January 13, 2017:

I never heard of this condition until my daughter was born with symbrachydactyly 3 months ago. No body noticed it at the hospital until they took her to a room where my husband discovered her 3 fingers short. Her left hand is slight smaller than her right and her last 3 fingers are missing 1 limb each. I noticed my husband crying and crying and that's when he told me about her fingers. I told him don't worry they'll grow until I finally saw them. I instantly felt a disconnection from my husband to my daughter. He was crying so much he put himself to sleep. I cry and I try not to think about her fingers I try not to look at them only because it breaks my heart that my beautiful baby girl has to go thru this. Knowing how people can be cruel and ugly. Stare and laugh or wonder if she's okay to be around with. I feel like I wanna hide her from this cruel world. I feel like I don't even want her to go to school. But my mom insist I should treat her normal. Like her fingers are not a problem. But I know they are. My husband has a mind set where he's want to fix them asap but I think she functions fine just the way they are. She grabs with them she throws things with her hand I feel like she uses it as much as her right. Her doctor request to get her x-rays done to see exactly what's going on with her fingers but I haven't gone I don't want to I don't want to find out any more bad news. I just want to leave it alone and not worry about it cause her doctor thinks she might need therapy. My sucks the most is I tied my tubed and now I can't have any more babies and it hurts cuz i feel like I need another baby I guess to prove I can do better this time or have a baby with out that problem. I need guidance.

Sherry Hewins (author) from Sierra Foothills, CA on June 12, 2016:

That's interesting Raymond Smith. So, it is not caused by a recessive gene. Nobody can be just a "carrier," without having the condition.

Sherry Hewins (author) from Sierra Foothills, CA on June 12, 2016:

Thanks for commenting Lidija. I understand exactly what you are saying. I felt very isolated when I was a kid. Those feelings were a lot more of a handicap than my little fingers. Now parents have FaceBook groups where they can share experiences and even get together to let their kids see other kids that have the same thing. I hope this helps the new generation of syms have more confidence.

Raymond Smith on June 09, 2016:

Hi I have the hereditary version of brachydactyly with fingers simialar to yous my mother and 3 of her sisters were exactly like yours . I was in a DNA research prog in 2001 and they found that 60-70% with the hereditary version had a common ancestor We were also informed that although it was hereditary it could not be passed on by family members with normal fingers M y sister has not passed it on to her children , but our cousins have .I tried to track it back thru ancestors but it is not possible for me . I have a copy of a medical journal from 1857 listing 6 generations .

Ray

Lidija on June 06, 2016:

Hi, there is more of us :) I'm almost 30 and even though I have been using the internet for years, I'm just starting to find out about symbrachydactyly. Actually, after the initial reading, it seams there isn't much to find out. But what makes me keep reading are other people like you and me. I wish someone have told me when I was younger that I'll be able to play the guitar or find boyfriends and friends regarding my attitude and not my hand appearance. I did a lot of intended self-depreciation thinking that I would protect myself from others rejecting me if I do it before they do, I think that was the worst what I experienced through the sym. package. Now I deal differently with it and somehow even feel cool about it. The main reason I'm writing this is my wish to tell to all younger and/or worried symbrachylors or their parents that it's not that much of a deal and from the moment you fully believe it it starts to be true. Thank you for the article

Tyler on November 09, 2015:

Hi I'm actually quite similar but I'm missing to the first knuckle on my left hand and my thumb is perfectly fine too! I had the same problem in school up until about 7th grade. I learned to just deal with it. Hell I even made jokes to make people laugh. I'm 18 now and I workout and I'm going to college and working out and I can do anything anybody else can and it doesn't hold me back at all. I'm glad I was born this way that's what makes me me.

Angela on November 07, 2015:

Thanks for this! I'm almost 24 and this affects my left hand and I never knew what it was called! My parents and I never did anything about it and I adjusted very well and even play piano pretty well. The only other thing I have noticed is that the nerves don't seem to be as sensitive as they are in my other hand so that extremes in temperature are not felt until they are either too hot or too cold and then it goes straight to pain. Other than that I just have short fingers... everything is fully functional :) Thank you for sharing this!

Sherry Hewins (author) from Sierra Foothills, CA on November 07, 2015:

Ms Angee - Congratulations. Your son is very lucky to have a fully functioning hand, even though his fingers are smaller. If he has a strong personality, my guess is that he won't have too much trouble with other kids. They tend to pick on the weak. Best wishes for you and your family.

Ms Angee on November 07, 2015:

My 17 month old son doesn't have the dactlyly as you, but he has something as his fingers on his left hands are smaller than the other hand. The thumb appears to be regular size but its hard to tell since he is still a baby.

They are fully formed and functional fingers just smaller. I never noticed it, his dad noticed it when he was about 5 months old. Of course I searched far and wide to find out what it could be. I found nothing. His doctor thinks it's nothing more than asymmetry.

Nevertheless, my concern immediately went to how are other kids going to treat him in school, etc. I still worry about it, but I don't really know what the end result will be with this because he has soo much growing ahead. Reading your story is inspiring and I know he will be strong and confident no matter what because his family will make sure he is.

Sondra Rochelle from USA on June 11, 2015:

I had a cousin (now deceased) who was born for nubs on both hands and both feet. She was a professional singer, vocal coach and pianist! Amazing, huh?

Sherry Hewins (author) from Sierra Foothills, CA on May 21, 2015:

Jen Adcalf - Congratulations on your engagement! How wonderful that this happy occasion has also caused you to take that step closer to accepting yourself. It sounds like you have wonderful and supportive people in your life. I know what you mean about showing the ring, I have always been uncomfortable with shaking hands. My affected hand also has less "grip" than my unaffected one.