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Post-natal clubs

Join our Postnatal Clubs forum to find parenting advice for newborns.

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Original poster

Born with missing toes, does anyone share this experience?

30 replies

drewsma · 30/01/2008 13:55

Hi all,

My son, born two months ago, was born with three toes on each foot and two fingures on his right hand are fused together

Has anyone had this experience?

This is the first occurence in both families
The consultant could not tell us what could have caused it but refered DS to plastic surgeon to see if there is anything they can do

OP posts:

Are your children’s vaccines up to date?

Set a reminder

dosydot · 30/01/2008 20:09

bumping for you, i'm sure there is someone who can help you out. no knowledge here i'm afraid.
Congratulaions on the birth of your DS

Original poster

drewsma · 01/02/2008 00:32

Thank you dosydot, thanx for taking a look at the thread, I was beginning to think I posted in the wrong place but I could not find a more suitable thread/topic

OP posts:

welliemum · 01/02/2008 00:36

drewsma, no advice, sorry, except to suggest reposting this in health. I think more people read health topics than postnatal ones so there's more chance of finding someone with a similar experience.

Good luck!

Original poster

drewsma · 01/02/2008 01:19

Oh thanks for that welliemum, will certainly try that

OP posts:

HL2736 · 07/04/2009 23:46

Hi....I just read your post...I am in the US...My son was born in March of 2006 and was born with 3 toes on each foot. You are the first person I have run into on a board that has shared the same issue. Please contact me at [email protected]. I would love to compare notes. For us there were no genetic issues and it was a surprise when he was born. The doctors said its an anomally. ~Helen (greatful that you posted)

Anandhi · 08/01/2010 06:28

hi my son was born 2009 and has also the same issue missing one toe in the left and two toes in the right. no genetic issues again, he is 9 months and crawling, was a bit anxious if he will have problems on balancing and stability, also his big toe in the left leg has a hallux varus problem because of a small bone that inhibits it from being in its position.

LK2boyzma · 31/01/2010 22:36

This reply has been deleted

Message withdrawn at poster's request.

rose39 · 29/05/2010 00:37

Hi All,

I was born with three toes on my right foot and no ankle almost 50 years ago. Doctors have blamed it on everything from my mother being exposed to measles or polio while pregnant to damaged sperm due to an ill- fitting IUD when I was conceived.

I wore a metal brace for many years, but while the doctors were concentrating on the orthopedics, they missed the fact that I had two deformed valves in my heart as well.

I can get around fine although I have a limp, not from the deformity but from the brace I wore 24-7 as a child which in affect stunted the right leg. Surgery when I was ten reduced the leg shortening from 4 inches to 5/8ths. But basically my growth was stunted, and because one foot was always bound in a shoe and the other wasn't, my feet are two vastly different sizes. Of course, today doctors know more and can avoid these things.

But, just make sure you are always your child's best advocate...question everything...get more than one opinion...and make sure the docs examine the whole child and not just the feet.

blesed1 · 30/07/2010 00:51

You might want to ask your pediqatrician about "TIBIAL HEMIMELIA".
My son is now 7 and we just got back from Shriners Hospital where they diagnoased him with this bone condition. His right foot has only 3 toes and from his pelvic bone down his leg is smaller and shorter than his left. He plays, runs kicks normally. He is now a purple belt in Taikwando so it has not hindered him in any way though his is a mild case. When he was born of course I was very concerned especially as he grew and the foot was nt keeping up with thwe other. We have to buy 2 sets of shoes unless we shp at Nordstroms where they will sell us 2 different sizes, I am told they are unsure why he was norn with this. Neither my husband or my side of the family have ever had any indication of this problem. I had an amnio and ultrasounds while pregnant and this was not picked up. However, Shriners told me he would have to see a genetics specialist in order to determine if his children will inherit this. My son will be monitered yearly and because the difference ois less than 1", they are able to make him SPECIAL LIFT FILLER that will lift his foot and fill in the width and length so his feet will be the same size when wearing shoes. I hope this information helps.
Good luck!

sailu · 27/12/2010 10:07

I too face the same 3 monhts ago. My son also born with 3 toes in right.
please share your experiences. Are babies with 3 toes able to walk normally?

75marina · 25/01/2011 14:47

hi
finally i am searching to find something 2 years now
my sons case is similar to blesed1
my son is now 26 months and he was born with 3 toes on his left foot and the left leg is also shorter 1,5 cm and the foot is shorter also
now his walking running and playing normally and we are motoring his situation every year the doctors say that they don't know why this happen but the didn't see it in the ultrasounds during pregnancy
now
now the doctor says that the most important thing is the difference of height if that stays as it is we are fine
we dont use yet fillers or different shoes but i just found a brand that has filler to gain some size and i am thing to buy these
good luck to all i thing this is a very rare situation i was searching for a very long time and i will be very happy if someone wants to compare situations

esje88 · 12/06/2011 11:56

Hello I'm Dutch girl and I?m 22 years old and I was born with 3 toes on both sides. I have special shoes and I walk just fine. I started with walking a little bit late (almost 2 years old) but my parents were very happy that I was walking! When I was 9 years old my leg begun to grow awry and I have had an operation for that. Also I have special soles for my normal shoes. Because I can walk also on sneakers or other shoes with laces. Last year I had some problems with my anklets. And I am not overweighed at all; I?m 1.60 m and 56 kg. But I train now every dag on my cross trainer and that is very helpful, my anklets are getting stronger, and also the mussels in my ankle. I have had a great childhood and I have practice every sport like horse riding, tennis and even basketball! Some kids wanted to bully me at school but I have an older brother who prepared me for bullying, so I was prepared and I never been bullied. This "situation" with my feet made me who I am today, a confident young woman who is every happy with herself. So if you have a child with this problem please don't see it as a limitation but access the things that your child can do! I also know that I cannot ran a marathon or become a ballet dancer, but I can walk, I can dance en I can do al normal things people of my age are doing. And that is important!.

larahd82 · 07/09/2012 22:04

I also have a similar situation with my son. He was born April 2011, with only 3 toes on his left foot, a slim ankle and very narrow foot. The leg is also shorter, most notibly from the knee downwards. This was never picked up on scans, much to our shock and fury. He walked from 11 months, never crawled, and is up and running now (17 months old). We have to buy different sized shoes (clarks offer split sizes for 25% extra cost), but we are waiting for the hospital to issue us with an in fill as his narrow foot doesn't fill the shoe, making him uncomfortable. He gets about as if he has no problems at all, so please dont worry on that account! As the height difference is more than 3 cm, he falls into the leg lengthening catagory, so aged 5 he is due to have a CAT scan to measure the differences exactly, then depending on the outcome, he will have a leg brace fitted to lengthen the left leg, prob aged 7. We have been assured by doctors that leaving him with a height difference until then will not effect his spine. If anyone has experience of this pleas contact me. Thanks, Lara

Rachielynn82 · 22/02/2013 03:56

I am the mom of a 12 almost 13 year old daughter born with only two toes (although she has lower bones for 3) on her left foot. Her leg is also slightly shorter on that side. I had her as a teenager and had doctors telling me to cut her foot and leg off and all kinds of crazy stuff. I was told she wouldn't walk. Let me tell you the best piece of advice to any mom really, listen to your heart! I promise you that somehow we as moms know our kids better than anyone and I refused to listen to those doctors and knew my baby would be okay somehow. At 14 months old, my little girl walked. She now plays sports and everything normal kids do. She has a whole lot of thanks to give to Shriners Hospital for her brace when she was a baby that strengthened her leg and foot and they put a small lift on her shoe as well, but they never charge anyone anything and they are simply amazing! What a change from the other pediatric orthopedist that told me to cut her leg off and treated my 5 week old baby like she had the plague!

BeckyR5377 · 13/05/2014 21:19

I want to share my story because it is important to see that even though someone has a limb discrepancy, it doesn't mean the end of the world.

My name is Becky, and I am 24 years old. My left foot is severely deformed - I only have two toes - the 2nd and third are merged into one big toe - and I am missing my fourth and fifth toe. My heel is turned out and my foot is almost half the size of my other. My left arm is also short with only three fingers and no thumb.

Because of the shape and size of my foot, I cannot wear a regular shoe on my foot. The orthopedist built me a special boot, but it is bulky and looks ugly. I often wear only a sock or stocking on my foot, but sometimes I will wear a specially modified flip flop or cast shoe on my foot.

I am a confident and fun girl, married with two kids and a great job. Some things are difficult, but everyone has their own little baggage to deal with.

I wish you well with your trials and tribulations in life! This should be the biggest issue you ever need to deal with.

Becky

frankiebuns · 31/08/2014 05:39

My dh had this he has all toes but fingers were fused he had an op at 2 years old he has more pudgy fingers but youd never know

Jennsweet · 07/05/2015 23:58

Hey everyone so I came across this and I was really curious to know more about my son. My baby boy was born with 3 toes on one foot and 4 on the other and on on top of his pinky he also has an extra toe...and I wanted to see if I can come across someone who I can relate to and also someone that knows a little more then I do...email me at [email protected]

ellieismyname · 01/06/2017 02:23

Hello,
My name is ellie and I am 17 and have 3 toes on my right foot. Also when I was born two fingers in my right hand were stuck together. since then I've been operated on so my fingers were separated. I am so happy to hear I am not alone with this foot issue. I've always thought I was the only one. It's been a struggle growing up and I've kept it secret from most people in my life scared what people will think when they find out. Apart from the issues mentally, physically I am perfect. I can run, dance and do anything I want to do. It doesn't stop me from everyday life so I am lucky. I would love if someone who understands what I'm going through could message me ( [email protected] ) it would be very helpful to hear more. Thank you!

Nicolekat · 29/01/2018 12:39

Hi,
My name is Nicoe. I'm 38 and I'm living in Australia.
I'm missing 2 fingers on my right hand, 2 toes on my right foot and 1 toe on my left foot.
The doctors couldn't find out what caused it.
I'm going to see a genetic counsellor in March this year to see if I can find out more. If anyone wants someone to talk to who understands please feel free to message me. There really isn't anything much I can't do or won't try

mimi7777 · 17/03/2018 05:47

Hi Nicoe,

I like to hear your story we are in the same boat what is your email address?Thank you

llorenz82 · 28/06/2018 21:45

i was born with 2 fingers on my left hand and 3 toes on my right foot and my left leg is shorter than my right leg. Noone has any answers why i was born like this. No-one in my dad's or mom's family has this wrong with them. I have children and everyone was born perfect.

ThomasBui · 03/08/2018 08:27

God bless to you

CatflapFlapjack · 09/11/2018 17:59

I’d just like to add another case to this thread given that it’s already spanned ten years and seems to be a very rare thing.

My nephew was born in 2011 missing a toe and with two others joined together. The affected foot and ankle are narrower than the other and an x-ray showed that one leg is shorter than the other, so he wears specially designed shoes to account for this. He was diagnosed with Fibula Hemimelia although there was some debate at the hospital as to whether that was the appropriate diagnosis. Happy for anyone to DM me if they want to chat about it.

CatflapFlapjack · 10/11/2018 20:41

@larahd82 I’ve sent you a DM if you’re still active on here

VishR · 25/02/2019 00:55

Finally i found some one in the same situation...after 38 years.
I was born with 4 toes on my left foot. The length of the leg was shorter as well, which was operated on. Its shorter by 3-4cm and i walk with a slight limp. Not sure if it was Hip Dysplasia but both my kids were screened for HDD, and the younger one had HDD in his right hip.Luckily I didn't pass on the 4 toes.
As i child it was hard and i was over the whole special made shoes, so now i wear mainly strappy sandals. Stilettos remain a dream though.

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