Information about different types of limb differences present from birth, the impact on your appearance, and how Changing Faces can support you.
A congenital limb difference is a limb difference from birth. Limb differences can affect the upper limbs (arms and hands) or lower limbs (legs and feet) and may affect one limb or both. It’s estimated that congenital limb differences affect between one in every 450 and one in every 370 babies.
Congenital limb differences are often identified in scans while the baby is still in the womb (in utero) or during the physical examination after the baby is born. Some limb differences do not become apparent until a short time after birth, or even for a few years. Treatment is most effective when started early, so regular postnatal and health checks help to spot any changes. You should check with your GP if you notice any differences or are worried.
Congenital limb differences can affect the way you look, although exactly how depends on the condition. Whether you have a limb difference yourself or are a parent or carer of a baby with a limb difference, the impacts of looking different can be challenging.
On this page, we share information about common types of congenital limb difference as well as the support and services we offer to help people with visible differences. We also signpost other organisations who may be able to help.
I used to expect the worse, so that if and when the worse did come I was prepared for it. Whereas now, I think if people don’t like it, they’re not someone I want in my life.
There are many types of congenital limb differences and unfortunately there isn’t space to cover them all here. We introduce some of the more common differences and list less common conditions underneath. We also share links to more detailed online resources.
This section is divided into upper and lower limb differences, as well as conditions which affect both upper and lower limbs.
People with Poland’s syndrome have webbing of the fingers as well as an underdeveloped chest muscle, usually affecting one side of the body. It occurs in about one in 20,000 babies and is more common in boys than girls.
As well as webbing and underdeveloped chest muscles, people may also have shorter-than-usual fingers and digestive problems.
It is not known what causes Poland’s syndrome, although it may be linked to a problem with bloody supply towards the end of the second month of the baby’s development in the womb.
It is not thought to be genetic.
Poland’s syndrome is not usually diagnosed until after birth and may not be apparent till years later, particularly in mild cases. Where it is suspected, it will be confirmed with a physical exam plus CT scan, MRI scan or X-ray.
Whether or not surgery is needed depends on how pronounced the condition is. Types of surgery include:
Following surgery, daily massage of the child’s fingers is needed to keep the scars soft and long, giving the child the most amount of movement and flexibility. Without massage, there is a risk that the scar tissue will tighten, restricting movement.
For more information, see the resource on the Great Ormond Street Hospital NHS Foundation Trust website.
Other, less common, upper limb differences, include:
In clubfoot, the bones of the foot are unusually shaped and the Achilles tendon at the back of the heel is tight. There are four types of clubfoot:
Clubfoot affects one in 1,000 babies. It is more common in boys.
Typically in clubfoot, the top of the foot is twisted downwards, causing the arch to increase. The heel will also be twisted inwards. In pronounced cases, the foot can look as if it is upside down when the baby is born.
Clubfoot is caused when the Achilles tendon is too short. Usually, the underlying cause is unknown (idiopathic). It is more likely to occur if the mother or pregnant person smokes while carrying the baby.
It is thought that genetic factors may be at play in the development of clubfoot. Babies are more likely to have clubfoot if a parent or sibling has it.
Clubfoot can be diagnosed in the routine 18-21-week ultrasound scan. However, it is most commonly diagnosed after the baby is born.
Treatment usually starts within one or two weeks of birth. Typically, it involves stretching the baby’s foot into a better position before placing it in a cast. This is done weekly for five to eight weeks. This is called the Ponseti method. Once the final cast comes off, an operation is usually performed to loosen the Achilles tendon.
For more information about clubfoot, please have a look at the NHS conditions page.
Hip dysplasia, or developmental dysplasia of the hip (DDH), occurs when the ball at the top of the thighbone (femur) does not properly fit into the socket (acetabulum). Often this is because the socket is shallower than usual.
Hip dysplasia causes the ball at the top of the thighbone to slide in and out of the joint. This makes it more prone to dislocation.
The condition can range from severe to mild. 6% of all babies have hip issues which get better on their own but around one in 1,000 babies needs treatment for hip dysplasia.
The exact causes are not known. However, it is thought that the baby’s position in the womb may play a role. Babies in the breech position – where the bottom or the feet are at the base of the womb – may be more likely to develop hip dysplasia because this can place more stress on the hip.
Genes may play a role. Hip dysplasia is more likely to occur if a parent or sibling has the condition.
Hip dysplasia is usually diagnosed when the baby is physically examined after birth. They are examined again in the six-to-eight-week check.
Babies are typically fitted with a fabric harness which is worn from birth to six months. Usually, this corrects the condition. Alternatively, a hip spica cast may also be worn. Occasionally, if these options don’t work properly, surgery may be needed.
For more information, have a look at this page from the International Hip Dysplasia Institute.
A leg length discrepancy is a difference in the length of the legs. This is often due to one leg being shorter than the other, because it is differently formed or because one of the leg bones (thighbone, thicker lower leg bones, thinner lower leg bone) is missing.
A leg length discrepancy can affect different people in different ways, depending on the nature, cause and extent. You may experience problems with posture, difficulty walking, knee problems and pain in the ankle, back, hip or knee.
A leg length discrepancy is usually linked to another condition – for example, a missing bone. In some cases, the cause is unknown.
This depends on the underlying cause.
It is usually diagnosed during a physical examination after birth.
Treatment depends on the cause. If it is caused by shortness of one leg, limb lengthening surgery is one option. This is where the bone is surgically cut and the two ends moved apart, causing new bone to fill the gap, resulting in a longer limb.
For more information, see this guide from Boston Children’s Hospital.
Metatarsus adductus is a common foot condition where the front part of the foot, including the toes, turns inwards.
It is often described as giving the sole of the foot a “bean-like” shape. It can affect one or both feet.
It is thought to be caused by the baby being squashed in the uterus (womb) towards the end of pregnancy.
There may be a genetic element in metatarsus adductus, but it is not well understood.
Metatarsus adductus is often picked up at an early age at the six-to-eight-week check or later by a health visitor. If not, it will become apparent when the child starts to walk – often the toes turn in.
Often the condition will get better without any treatment. Most babies grow out of metatarsus adductus by their first birthday. If not, your doctor may recommend a cast or splint or special shoes to help reshape the foot or feet.
For more information, have a look at this guide from Cleveland Clinic.
Other, less common, lower limb differences, include:
During pregnancy, the baby develops inside a membrane called the “amniotic sac” within the uterus (womb). When the amniotic sac is damaged, this can create strands of tissue (amniotic bands) which can entangle the baby, cutting off blood flow and preventing the baby from growing normally. It occurs in between one in 1,200 and one in 15,000 pregnancies.
ABS can cause a range of impacts, affecting different parts of the body. Often the upper and/or lower limbs are affected, causing conditions such as:
ABS is caused when the amniotic bands cut off blood flow to parts of the foetus as it develops in the womb.
No, ABS is not genetic.
In many cases, ABS is diagnosed at birth because it is difficult to make out the amniotic bands in an ultrasound. However, in some cases, growth impairments such as limb differences are picked up by an ultrasound and other scans are carried out to confirm the diagnosis and see more clearly what is happening.
If ABS is diagnosed before birth, foetal surgery may be performed to save the baby's life or prevent significant differences from developing. The surgeon will cut the bands to stop blood flow being cut off. In many cases, surgery is not needed as the impacts will be mild. Some babies may need surgery after birth or later in life.
Other treatments focus on the specific impacts of ABS – for example, syndactyly or other non-limb differences such as cleft lip or palate. Children with missing limbs may need a prosthesis (artificial body part).
Visit the Nationwide Children’s Hospital website for more information.
Arthrogryposis or arthrogryposis multiplex congenita (AMC) is used to describe a range of conditions involving stiffness in multiple joints. It most commonly affects the upper limbs – affecting the wrist, hand, elbow and shoulder – but it can also affect the lower limbs and other parts of the body as well, including the jaw. Some people with arthrogryposis may also have spine curvature. It affects one in 3,000 live births.
In arthrogryposis, it may be difficult or impossible to fully or partially extend or bend the affected joints.
Movement in the uterus (womb) helps the baby’s joints, muscles and tendons to develop. Often, babies with arthrogryposis did not move as much as usual in the womb. This can be caused by:
It is not caused by anything done (or not done) by the mother.
There may be a genetic cause in about one third of cases.
It is not usually possible to diagnose arthrogryposis before birth. However, in some cases, doctors can spot the signs in ultrasound scans. After birth, scans and tests will usually be carried out to confirm diagnosis.
Arthrogryposis cannot be cured but it can be treated surgically and non-surgically. Physical therapy and occupational therapy can help your child carry out everyday activities and develop skills they need for independent living. Splints and casts may be used to hold joints in place and may even ease stiffness. If surgery is needed, it is usually carried out several years after birth, once your child has benefited as much as possible from physical and occupational therapy. The exact nature of surgery depends on your child’s needs.
Learn more on the Seattle Children’s Hospital website.
These three conditions affect the digits (“dactyl” refers to the fingers or toes):
These conditions are often caused by genetic factors, in particular, a gene referred to as an “autosomal dominant trait”.
If one parent has an autosomal dominant trait, each of their children has a 50% chance of inheriting it and developing the condition.
The conditions are typically diagnosed when the baby undergoes a physical exam at birth.
In polydactyly, it’s usually necessary to remove the extra finger or fingers. In the past, this was done by “tying off” the additional finger but, according to Great Ormond Street Hospital NHS Foundation Trust, this is no longer recommended as it can cause pain, increase the risk of infection and leave a bump. Nowadays a short operation is performed to remove the extra finger/s.
Syndactyly is treated surgically to separate the joined fingers. This usually takes place at the age of one or two.
Have a look at the Great Ormond Street Hospital NHS Foundation Trust website for more information.
Georgie was born with Klippel Trenaunay syndrome, making her right leg and foot noticeably bigger. She used to cover up her condition and although she still feels self-conscious, speaking to Changing Faces helped her accept her visible difference.
Read Georgie's storyYou may also be visiting this page because you have a congenital limb difference yourself and are struggling with the impacts on your appearance. Or maybe you’re a parent or carer whose baby or child has a congenital limb difference. If so, you may be wondering what the impacts might be as they grow up with a condition that affects the way they look.
Congenital limb differences are wide-ranging and can affect your appearance in various ways. This may be for life or it may just be during the early years before disappearing with age or treatment. Others can become more prominent as a child develops. Your doctor will provide information about what to expect – and in many cases you will find that there are specialist organisations offering support to people affect by your, or your child’s, condition.
At times, living with a visible difference can be challenging. You may be conscious of people looking at you or your child. Sometimes, people may make comments or ask questions. School can sometimes be difficult for children with a visible difference and as a parent or carer you may worry about bullying.
There is plenty of support available if you are affected by a visible difference – whether you have one yourself or have a child with a visible difference.
Here at Changing Faces, we offer confidential, one-to-one social, emotional and psychological support through our counselling and wellbeing support service, which is available to adults, young people and children living with a visible difference. Our wellbeing practitioners are specially trained to work with you over a number of sessions, giving you a space to talk about what’s on your mind.
We also offer online workshops for children and young people and their parents. These workshops provide an opportunity for your family to talk to others affected by visible differences and learn tools and techniques for managing the challenges you may experience.
Our self-help guides cover a wide range of topics and are available freely on our website. They cover all aspects of life – from school and work to mental health, confidence and relationships. As well as resources for adults with visible differences, we have guides specifically designed for parents as well as a series for children and young people.
There are a number of other ways we can support people with congenital limb differences here at Changing Faces:
If you’re interested in accessing our services, please contact our Support and Information Line. As well as connecting you to our services, our team can offer support calls for you to talk about the impacts of a visible difference on your life.
Guidance, support and advice is also available from other organisations. Please follow the links to their websites to learn more.
Reach is a UK charity providing support for children with an upper limb difference and their families. Reach offers regional meet-ups across the UK and Ireland offering a friendly, caring place to meet and enjoy fun activities to encourage children with a limb difference to aim higher.
Steps offers support to families affected by congenital lower limb differences. As well as working with the NHS and supporting research, Steps offers peer-to-peer support for families, online support, a helpline, legal support, text and video guides for parents and more.
A national, highly specialist psychological service based at North Bristol NHS Trust, supporting adults (16+) with appearance-related distress. They can provide face-to-face and remote support via NHS Attend AnyWhere. Please speak to your GP or healthcare professional to discuss a referral.
Have a look at the NHS conditions page for official guidance on congenital limb differences. We've linked to the main conditions A-Z list – scroll through to find your condition (not all conditions are covered).