Limb difference

Limb difference in children happens when a child or young person is born with difference in a limb, or loses a limb early in their life. 

There are 2 types of limb difference: 

• congenital — present from birth
• acquired — usually from an accident, trauma or infection 

Congenital limb difference can also be called: 

• congenital limb reduction
• congenital limb deficiency
• dysmelia 

Congenital and acquired limb differences have different causes.

Congenital limb difference

Many factors can cause congenital limb differences. The most common causes are: 

• genetic
• environmental 
• use of certain medicines or drugs

It may also be caused by a syndrome or other issue during fetal development. 
Amniotic band syndrome is a very rare cause of congenital limb differences that can happen during pregnancy. 

A lot of the time, the cause for congenital limb difference is not known.

You may have a higher risk of having a baby with a structural abnormality if you:

• are an older age group
• have been exposed to harmful chemicals 
• have hypothyroidism
• have a family history of congenital abnormalities — this can mean more frequent screening ultrasounds are done during pregnancy

Acquired limb difference

Someone with an acquired limb difference may have had an amputation to remove all or part of a limb. This may be due to an accident (trauma) or an illness (cancer or infection).

During pregnancy, your doctor can check for limb difference using ultrasound.

When a limb difference is diagnosed during your pregnancy screening ultrasound, the exact type of difference might not be known until after your baby is born.

If a limb difference is not diagnosed during pregnancy, it is usually found at birth by either a parent or health professional. All babies are checked by a doctor or midwife when they are born. This is done to look for any abnormalities.

Your doctor will arrange tests to confirm the diagnosis of limb difference such as:

• X-rays 
• magnetic resonance imaging (MRI) 
• ultrasound

Other tests can also detect signs of an underlying bone or genetic issue. 
At first, after your child is diagnosed, it may be hard to fully understand the extent of their limb difference and how it may affect their function. 

If your child has limb difference, care is available.

If your child is older, they need to be involved in their treatment planning. How parents and health professionals talk with them is important. They should feel like they have a say in what is happening. They are also more likely to be compliant with therapies if they feel someone is listening to them.

Support and counselling

Congenital limb differences may be first detected in pregnancy during screening ultrasounds. This can be distressing to expectant parents. Your doctor will offer counselling, early treatment planning and discuss your pregnancy management options.

If your child has acquired limb difference due to an illness or accident, this can also be distressing. Your doctor can offer advice and refer you and your child for more support.

Prosthesis

Your doctor may suggest that your child could benefit from a prosthetic. This may be an orthotic, or a device that replaces a body part.

If a prosthetic device is needed, careful measurements are taken after the skin and stump have healed and any swelling has gone down. The stump is the portion of a limb that remains after a surgical amputation.

As your child grows, devices often need to be adjusted or replaced.

Surgery 

Reconstructive or limb-lengthening surgery can help to correct differences in a limb. 
Sometimes a surgical limb amputation is done because of an existing limb difference. This can help a prosthetic fit better over the remaining limb so it can work better.

If your child needs amputation, your doctor will decide if limb reconstruction is possible and how a prosthetic device will fit onto the stump. 

Therapy

Children with a limb difference may benefit from physiotherapy and occupational therapy. These help to increase the strength and function of their affected limb. 
If your child has acquired limb difference from amputation, they will go through many physical and emotional changes. During this time, goals may include:

• healing
• regaining coordination and balance
• returning to normal activities 

If your child has a limb difference, there are support services to help you and your child with: 

• medical care 
• therapy
• financial support 

Children’s hospitals and community health centres offer early intervention support.

In Australia, there are many support allowances available for people with a disability and their carers. These may depend on how your child is impacted and their need for care.

The National Disability Insurance Scheme (NDIS) provides support and services to people with a permanent or significant disability. NDIS funding helps to cover all reasonable and necessary disability equipment, care and support services for people aged from 0 to 65 years.

For children with a limb difference, NDIS funding can cover the cost of:

• prostheses
• aids and equipment
• home modifications
• some therapy services
• regular meetings with an NDIS planner to help plan for a child’s needs and goals
• ongoing support once a child reaches 18 years of age

Parents can find it hard to talk about their child’s limb difference. There is no one right time or way to talk with others. Every parent and family is different.

Partners may see their child’s disability differently. You may not agree with your partner on how and when to talk with others about it. It’s important to talk and to listen to each other especially when your child has had an unexpected diagnosis or you need to make decisions about treatment. 

You can decide how much you are comfortable to share with others. If you don’t feel like talking, let others know you’d like some privacy and time.

If your child has a congenital limb difference, some parents tell family and friends before their baby’s birth. Others wait until the baby is born. Parents who learn of their baby’s limb difference at birth may wait to share the news with others when they are ready.

Talking with other people can help them to understand your child’s situation. This can help them to support you.

Limbs4kids has a wide range of easy to read resources about services and advice for parents of children with limb differences.

Children’s Health Queensland has created a collection of Australian families’ experiences of raising a child with limb differences.

If your child has a hand difference, Aussie Hands has resources and support available.