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Born with missing toes, does anyone share this experience?

(17 Posts)
frankiebuns Sun 31-Aug-14 05:39:59

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

BeckyR5377 Tue 13-May-14 21:19:28

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

Rachielynn82 Fri 22-Feb-13 03:56:16

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!

larahd82 Fri 07-Sep-12 22:04:58

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

esje88 Sun 12-Jun-11 11:56:26

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!.

75marina Tue 25-Jan-11 14:47:35

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

sailu Mon 27-Dec-10 10:07:21

hi

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?

blesed1 Fri 30-Jul-10 00:51:03

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!

rose39 Sat 29-May-10 00:37:07

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.

LK2boyzma Sun 31-Jan-10 22:36:43

Hello HL2736 and Anandhi

I AM DREWSMA, only I have forgotten my login details! I have written to you HL, wondered if you got my email, please check your email if you have not. You can also email me or any one else who may wish to contact me on be_cky007@live.co.uk. It would be great to compare notes and see how you guys been doin.

Anandhi: I had the same worrie about whether DDS was going to walk or not, but he is all over the place, running and kicking football

Anandhi Fri 08-Jan-10 06:28:08

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.

HL2736 Tue 07-Apr-09 23:46:12

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 hliguori27@yahoo.com. 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)

drewsma Fri 01-Feb-08 01:19:44

Oh thanks for that welliemum, will certainly try that

welliemum Fri 01-Feb-08 00:36:55

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!

drewsma Fri 01-Feb-08 00:32:05

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

dosydot Wed 30-Jan-08 20:09:17

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

drewsma Wed 30-Jan-08 13:55:57

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

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