Discovering that your child has fibular hemimelia can be overwhelming.
Our goal is to offer guidance to help you and your child through their fibular hemimelia journey and provide support along the way.
On this page you will find:
- What is Fibular Hemimelia?
- Why Does it Happen?
- How is Fibular Hemimelia Detected?
- Treatment of Fibular Hemimelia
- How Will Fibular Hemimelia Affect My Child?
- Sharing the News
- Support
- Resources
What is Fibular 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 fibular hemimelia, the tibia is shorter than normal and the fibula is missing or underdeveloped. A leg affected by fibular hemimelia will look shorter than an unaffected leg. There may also be associated anatomical changes such as:
- the tibia may be bent
- the foot may be smaller than those of other children and bent outwards at the ankle.
- bones in the foot may not have formed or may be fused together and the child may have fewer than five toes
- the knee is often also misshapen and may not move properly.
Fibular hemimelia is rare, occurring in approximately 1 in 25,000 births, but is the most common form of limb-difference present at birth. Usually only one leg is affected. Fibular hemimelia affecting both legs (bilateral) is much rarer.
Eilidh talks about the diagnosis and treatment of her daughter Niamh:
Why Does it Happen?
In most cases, it is not known why fibular hemimelia happens. It can be a symptom of another genetic condition, but fibular hemimelia itself is not thought to be genetic. Most children born with this condition have no family history of birth defects.
How is Fibular Hemimelia Detected?
Severe cases may be seen at scans during pregnancy. In milder cases, it may at first be thought to be a foot problem, but when the shortening of the leg becomes more noticeable and the leg is X-rayed the full picture can be seen.
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 Fibular Hemimelia
Treatment will depend on the severity of the condition and the needs of each child. In some cases, no treatment is required. Where treatment is needed, this can range from the use of insoles or other orthtic splints to compensate for foot shape to surgery.
The type of surgery used will depend on the shape of the foot and the fibular.
If the foot is reasonably normal, it may be possible to lengthen the leg using a thin metal frame worn around the leg (fixator) or a lengthening nail, depending on the age of your child.
If the foot is twisted outwards, it may be possible to correct it using surgery.
In cases where the fibula is present and shortening is not severe, treatment is usually leg equalisation by lengthening the affected leg or by slowing the growth of the other leg (epiphysiodesis) or sometimes both.
Watch our webinar on limb lengthening below
In the most severe cases, it may be best to amputate through the ankle and fit an artificial limb (prosthesis/prosthetic limb). Prosthetic limbs can be used in almost all situations, including in water.
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.
Steps have also produced a guide – Preparing For Your Child’s Surgery to help parents and carers prepare themselves and their child for a hospital admission.
How Will Fibular 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 as a family will help them prepare for whatever the future holds.
As the many achievements of the children whose families we have supported demonstrate, even amputation is no barrier to a full and active life and the most important thing is to always encourage full participation in whatever your child shows an interest in.
Laila’s parents talk about their choice of treatment:
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 fibular hemimelia links and related resources can be found below
