a baby born with a short leg

[littlerobin]

Has anyone heard of or had a baby being born with a short leg.Has anyone experienced a baby having a break in her babies tummy.I know it is so extrem but does happen.

I know of a grown man who has 1 leg shorter than another.

littlerobin, is this your baby?

There is a poster on here called Blu whose little boy has a congenital condition which means that one of his legs is shorter than the other by quite a bit.

My dd had a clot which damaged the blood flow in one of her legs and the growth in that leg was slower than her other. Blu's little boy has been having leg lengthening and my dd had her long leg shortened (rather the growth restricted).

Yes she is my little darling.I am trying to find an orthopedist who can follow her up well and treat her when she is ready.According to the doctors she is going to have a big difference at the maturity for which they can not do lengthening.Offcourse mums would not take this as an answer.I heard an orthopedist in America who is doing the large differences in length.It is a shame I can not find one who would do the same in England.I wonder how is Blu's son getting on with the lengthening and who is doing it?

littlerobin - have a look here STEPS webiste. There's a discussion forum and if you call the helpline they can point you in the direction of a good consultant in your area.

I'll try to point Blu in the direction of this thread for you too. Her little boy is treated at one of the London hospitals. Whereabouts in the country are you?

I Live in Guildford. Has seen a consultant at Great Ormond Street Hospital with e great hope.But unfortunately he sort of made it clear that he would not try to do lengthening.I thought that was unfair to take a negative approach since she was only tiny than. I think it is fair to wait and see how her little leg is goin to develope.Thank you for pointing out Blue to me.I was reading her posts.She seems to be very strong.My heart is full of worries, sometimes feel very week.. But other times I shake myself and think if I am strong my baby wiil be the same.

littlerobin - you're bound to be worried, but you're right, be strong and your dd will be the same. They surprise you, they really do.

You don't need to rush into any decisions - orthopaedics is a slow speciality. There's rarely a need for sudden decisions.

Keep checking in here.

Hello, LittleRobin,

Thank you saggar for bringing me here .

Congratulations on the birth of your little girl Robin - how old is she now? Bouncing, at least, I would guess, as you have had time to be referred to GOSH.

DS was born with 'fibula hemmimelia' - or more recently called 'fibula deficiency'. He has no fibula in his left leg, which was shorter than the other - a discrepancy which increased as he grew. In addition his foot was in the talipes (club foot) position at birth. These things just happen: our consultant said that as the cells are undergoing millions and millions of divisions in the early growth stages, things just go a bot wrong.

For the first year the consultants ummed and aaahed, and monitored the situation. I was under the impression that lengthening could succesfully be attempted if the discrepancy was below a certain percentage. DS's leg was 'borderline' between a clear 'lengthen' or 'don't lengthen' percentage. But there are other factors: is the rest of the foot and leg strong enough for ongoing surgery and a good outcome for mobility? And doubtless other things that consultants have to weigh up.

Is the shortening in your baby's leg in the femur, or tibia? (i.e thigh or shin) - sorry, not sure how far you have begun to talk doctor talk!!! You start to learn a lot of latin and greek in these medical specialisms!

There have been cases where people have achived large amounts of lengthening bu doing the femur and tibia, and in two or three separate procedures during the child's growing years. What is the reaosn they have told you that lengthening is not suitable?

Whatever you do, I would certainly advise a second specialist opinion - ie. GOSH and another specialist, not Guildford. OUr consultant actualy aranged fr us to get a second opinion at GOSH - and it was the who swung us towards lengthening, because our own consultnt was more cautious, and although careful not to tell us what to think, she was veering towards a prosthetic as a solution.

Her caution was well founded, I think. I see you have read my blog (thank you ), and lengthening IS hard, and a lot for a child to go through. Balanced against that is that a prosthetic limb has excellent mobility potential these days - and the procedure is quick, enabling a child to start to learn to walk early using a prosthetic.

There is a doctor in America (Baltimore, I think) called Dr Paley who is famous for big lengthenings - I used to read an American site called LimbDifferences.org where lots of American parents had children being treated by him.

Whatever happens, please do not worry too much. Your dd will be a happy, active little girl. There are other MN-ers can tell you how my DS is a happy, confident little boy, who was brilliant at climbing in the park, in his splints and shoe raise. In clinic we see girls whoare lengtheing, or have prostheses, and they too are getting on with their lives.

If you subscribe to the CAT facility on MN, send me a message and I will tell you which hospital we go to.

LittleRobin - mean to add - have either hospital given you the oppotunity to meet any other children with a prosthetic leg, or any of the other solutions that might be possible? W found that REALLY helpful. An organisation called CAF - Contact a Family may be able to help you.

RE lengthening, if GOSH have said 'not sutable' they are almost certainly right, they were more ambitiou about the amount they would be happy tolngthen than our consultant. But I think any parent would want a second opinion before taking any major decision.

Hello Blu,
Thank you ever so much for all the inside you very kindly gave me regarding the initial state of the long process.My little baby is only five months old.It seems like her whole leg is effected by the condition.Her fibula is little shorter than the left side and her femur seems to be significantly short.I guess the only thing keeping me strong is that 'there is always a hope'.Hopefully she has such a long life in front of her.I am sure the treatment options will change dramatically for good.i will send you a message through CAT facilty.It is really wonderful to receive such a support.I sometimes do feel really lonely.As if you and your baby are from a different planet.There is no one to offer you help.THANK YOU for your valuable support blu

Have a look round the STEPS website as Saggar suggested - there are case studies an a discussion board - have a look at both case studies under 'lower limb disorders' and you will see fantastic stories of girls who are doing well with conditions similiar to your baby's! Steps also send out a regular magazine if you jopin - or at least they used to!

Contact a Family have been an excellent help to me at different times.

I agree that it can feel very lonely. I was lucky enough to find out before my DS was born that he would have a 'non-standard leg' so had already found out about STEPS and potential options before he was born, and been in discussion with other parents through STEPS board and Limbdifferences.org. MN is a much more recent addiction!

Presumably you are having regular clinic appointments to monitor her leg, and they will propose a plan before she is ready to become mobile?

I wrote an extended diary type letter to DS explaining to him everything that was happening, so that when he is older he can understand what decisions were made, and why.

Stay on Mn - the support fom other parents is fantastic, even if people do not have the exact specific experience relevant to your baby's leg. And introduce yourself on the SN board here - many of the parents have children with quite different needs etc, but a few of us are discussing legs, splints, bones etc, and it is a v friendly section.!

Hi littlerobin - just wanted to say hi. My DS2 was born with bilateral talipes (clubfeet) - different to your little girl, but I would be very happy to offer you any help and support I can as I remember vividly what it was like taking DS2 for treatment for his feet.

Hi Littlerobin - my husband was born with congenital shortening of the femur - basically one of his thighs is significantly shorter than the other and also his shin is shorter and smaller. He had his ankle joint fused when he was a child and so his foot points downwards - I think this was done to help with fitting a prosthetic and it certainly means that his prosthetic fits more smoothly (there is less of an obvious curve where his foot sits.)

I imagine there are different and more varied treatments available now than when he was born (early 60's)- but happy to talk if if I can help at all.

Hello SixSpotBonfire and tazmosis thank you for your support a well.Whole thing was a bit too shocking for us.I had never heard a congenital shorthening of a leg before.I guess our knowledge about the world around us is very limited sometimes. I like the way blu describes it as having a baby with 'non-standard leg'.I am sure she will teach me how to be non-standart and still be strong and happy.But still believe in sciences and great developments in medicine.I am sure we will find an answer to her condition at some point of her life.

It is quite rare, and because there are somany 'ifs and buts'and causes - as well as a whole range of different approaches based on how the soft tissue is arranged, the condition of bone and feet, disrepancy etc, there is no easy way of bringing people together - everyone has a different experience.

Since GOSH have said they wouldn't do lengthening, are you back with guildford to work out what will happen next?

I see that Tazmosis' DH has the kind of prosthesis which fits over a foot. We met a child who has one of these - and also the type in which the foot is removed to allow 9aparantly) a more stable prosthesis - like the girl in te STEPS website.

Do they think your baby has normal muscle tone etc? Are her feet OK and in the usual position? They should son be talking to you about what can be done to enable her to start learning to walk in 6 or 7 months!

My DS had a soft-tissue operation when he was 11 months, to straighten out his foot. The plan was that his foot would be straightened just in time for him to start walking so that his walking acted as the physio to keep his foot in the right position. But it sounds as if your baby has no problems with her foot?

Hi Blu,

I wanted to find a consultant in Guildford in order to get my baby to be followed up localy. I think it would be hard to get to GOSH for follow ups. The local consultant had exactly the same management plan.I am not sure if there is any consultant who does the large lengthenings in this country.If not we will have to find the solution somewhere else I guess.My baby has not got significant problems with her foot.But still do not now exatly how the whole leg is progresing.That is what I am due to find next.How is your DS getting on?
We are going to see the prostetic clinic in December.I am going to try to reach you via CAF website.

Hi Littlerobin, my DS is under an Orthopaedic consultant in your local area who does a lot of lengthenings. My DS has a different congenital condition and the consultant is a known expert for that, but I thought it might be worth mentioning.
If you would like to CAT me, I can send you his details.

Hi LittleRobin,

DS is doing very well, thanks!

I agree that local provision is important, we spend so much time in clinic and consultant apointments!

Re-assuring to know that the management plan would be the same.

I know the risks associated with lengthening increase significantly the bigger the lengthening, and I believe (but not completely sure) that lengthening the femur is more complicated than lengthening the tibia. What percentage is the discrepancy at the moment? I know the discrepancy between DS's legs did increase as he grew.

I can completely understand your feeling tat it is 'negative' to strike lengthening off the list of options, but in all honesty, had DS discrepancy been greater, and significant in both parts of his leg, there is a strong chance that we would have opted fo a proshetic. There have been times during the current procdure that i have questioned the decision we made for lengthening. DS missed half a term of school - children with bigger or repeated lengthenings may miss a total of two years or more. I constantly have in the back of my mind that a serious bone infection (easy to catch with metal pins going from the outside through the centre of the bone) could cause him to lose his leg anyway - it is a tough process for a child to go through. On the other hand, learing to use a prosthetic from the beginning usually gives a very good level of mobility.

I have huge sympathy for anyone at your stage of the process - the decision-making was agonising for us. Part of the problem is that there is no one deciion that is problem-free. All your options come with challenge and anguish...but in the end your DD will do well, and she will amaze you with her achievements.

There is an old thread by me here about my own ongoing decision-making and how painful and hard I found it. Warning: I wrote it when v upset and some of the language in the OP is graphic and probably goes into areas which are your worst fears....The deleted posts by Eefs gave length information about a child in her wider family who had a prosthetic...was doing very well . She deleted them in case details made the child identifiable. The other withdrawn messages are from people who had all thier posts deleted for various reasons not to do with my thread.

IF your dd's prosthetic would involve amputation of her foot, or below knee I understand how confronting a thought that is. But that is where there are no easy answers anyway - I held DS while he was anaesthetised fo an operation that included breaking and cutting right through the bone. Once you are in the thick of it, these details just become part of the process and you keep your eyes ahead on the outcome. I have read many posts on the STEPS website where parents are remakably calm after the event, about the amputation part of the procedure...I have certainly found that with all the surgery DS has had , the thought of it beforehand has been more daunting than the actuality.

Have a look at the American site here: Limbdifferences.org you might find experiecnces from parents who have been offered longer lengthenings than are common here.This is an account by parents of a child with femur and tibia shortening aiming for a big lengthening in America. I note that they stayed away from home for 4 months to get a lengtheing of 3". DS has had his fixator on for 5 months now - we managed 6.3 cms but stopped because the pain was becoming to much.
I see that those parents did e mail x rays to Dr Paley for an opinion.

I used to visit LimbDifferences.org a lot when DS was small, but now find that the emotional and psychological support on Mn has been really helpful in addition to detailed orthopaedic experience.

It's good you have the chance to go to the prosthetic clinic, and hopefully you will have a chance to talk to parents with a wide range of experiences.

And Hi! Montmorency - sorry I have been so out of touch! Will try and e mail over the w/e.

I wish littlerobin and blu all the best.

My dd2 was diagnosed with a slight shortening of the left femur at her 23 week scan. She has been very fortunate, the difference was only 10% and the femur the only bone to be affected. Interestingly, the antenatal scan noted her left femur to have a midpoint angulation of about 30 degrees, ie it bent in the middle. I was assured that this could not have been caused by a fracture in the womb, since the femur was the only bone affected (it looked like a badly set break to me). She was under the care of Mr Gough at the Evelina children's hospital for a few years, but does not see anyone now because she has been very lucky and has no problems.

Surgery initally discussed with us centred around shortening the longer leg, at just before puberty. However, we were also advised about lenthening if her left leg grew more slowly than her right. She will not need surgery now, perhaps just a lift in her shoe if she develops back pain.