Discovering that your child has tibial hemimelia can be overwhelming.
Our goal is to offer guidance to help you and your child through their tibial hemimelia journey and provide support along the way.
On this page you will find:
What is Tibial Hemimelia?
Why Does it Happen?
How is Tibial Hemimelia Detected?
Treatment of Tibial Hemimelia
How Will Tibial Hemimelia Affect My Child?
Sharing the News
Support
Resources
What is Tibial Hemimelia?
There are two long bones in the lower leg, the thicker one is called the tibia, and the thinner one is the fibula. With tibial hemimelia, the fibula is present, but the tibia is either missing or is only partially developed. A leg affected by tibial hemimelia will usually look different to an unaffected leg. There may also be associated anatomical changes such as :-
The lower leg is short
The foot may have additional or absent toes
The fibula may be misshapen
The foot may be turned inward and the toes point downward
The knee may be unstable
Tibial hemimelia is present at birth (congenital) and is extremely rare with only one in every one million births thought to be affected. It occurs more often in just one leg (unilateral), predominantly the right leg, but in around a third of cases, both legs are affected (bilateral).
Steps have produced a Fact Sheet about tibial hemimelia to help parents understand the condition and its treatment.
How Does it Happen?
In most cases, it is not known why tibial hemimelia happens. It can be associated with other conditions, congenital deformities and syndromes, some of which do have a genetic link but it can also occur randomly with no family history.
How is Tibial Hemimelia Detected?
Some cases may be seen at scans during pregnancy though for others; it may not be apparent until after the baby is born when the shortening of the leg becomes more noticeable. Once an issue is identified, the leg will undergo investigations using X-rays, ultrasound scans or MRI scans to assess the severity of the condition and whether other parts of the leg are affected, such as the knee, thigh muscles, and the ankle.
Steps have produced a downloadable publication, Leg Length Difference, for parents who have been told of a possible problem with their baby’s legs.
Treatment of Tibial Hemimelia
Treatment depends on the exact form of the condition.
In very mild cases, with a reasonably functioning ankle, a shoe raise could be sufficient to compensate for the difference in leg length though surgery will be required in all other cases.
Steps have produced a downloadable guide – Preparing For Your Child’s Surgery to help parents and carers prepare themselves and their child for a hospital admission.
There are two main surgical approaches:
Limb reconstruction – this treatment aims to save the limb and enable the child to achieve the best functional outcome. Multiple surgeries may be required over a prolonged period which may include surgery to improve the position of the ankle and stability of the knee (joint stabilisation) or leg lengthening operations.
Watch our webinar on leg lengthening below
Amputation – removing the limb may, however, provide the safest treatment and may be the only option if the tibia is absent and the knee joint is not functional. Amputations will usually be performed when a child is around one year old. Following surgery, a prosthetic limb will be fitted which will enable them to function very well, living an active and fulfilling life.
Steps have produced a downloadable publication – Planned Amputation, a Parent’s Guide to help parents and carers prepare themselves and their child for a lower limb amputation, which includes pictures of prosthetic legs.
Watch our video on planned amputation
In our Prosthetic Equipment list, you can find suitable equipment, such as car seats and buggies, that can be used by children wearing prosthetic legs based on suggestions from parents.
How Will Tibial Hemimelia Affect My Child?
Discussing your child’s condition and treatment with them openly, in simple terms and promoting positive body image in both them and you as parents will help them prepare for whatever the future holds.
As the many achievements of the children whose families we have supported demonstrate, the condition is no barrier to success and the most important thing is to always encourage full participation in whatever your child shows an interest in.
Rhys was born with tibial hemimelia and his mum describes the ups and downs of his diagnosis, surgery and all the exciting things he was up to by the age of 11. Read More
Sharing the News
When and how you tell close family, friends and other relatives about your child’s condition is a very personal decision which will be impacted by how and when the diagnosis occurred, the individual prognosis for your child and the potential treatments available.
There is no right or wrong way or time to share the news, however, being well informed about the condition and having the opportunity to connect with other parents who can understand what you are feeling will likely help.
Once you do share the news, your relatives and friends will probably want to know how they can support you and your child, so take advantage of the experiences being shared by other parents, to help you feel better equipped to answer such questions and get the support that is right for you.
Support
Steps is here to offer emotional and practical support.
The Steps closed Facebook Group is a friendly and safe way of discussing your worries, sharing tips and finding emotional support. Our Family Contact Service identifies someone else who has been through a similar situation and who’s happy to talk about their experiences, on a one-to-one basis, to offer support.
You can reach out to Steps with your questions, concerns and requests via email info@steps-charity.org.uk or leave a voicemail message on 01925 750271 and one of the team will be in touch.
All our tibial hemimelia links and related resources can be found below
Resources
Prosthetic Equipment list
