Limb Service, Kids Rehab, The Children's Hospital at Westmead

Contact details

Telephone: (02) 9845 2131 or (02) 9845 0833

Fax: (02) 9845 0685

Email: SCHN-CHW-KidsRehab@health.nsw.gov.au

Location: Children's Assessment Centre, Level 3 Outpatients, The Children’s Hospital at Westmead

The Limb Service is part of Kids Rehab at The Children's Hospital at Westmead. It is a statewide service caring for children and young people with limb loss that is either present at birth, or occurs during childhood.

The Limb Service provides information and specialist support regarding the child/young person’s needs. We aim to support children, young people and their families through the main developmental, growth and transitional periods in their life to promote active participation in their home, school and community.

All clients of the Limb Service are seen by a multidisciplinary team consisting of health care professionals as needed, such as Doctors, Physiotherapists, Occupational Therapists, Social Workers, Nurses, Prosthetists, Speech Pathologists, Case Managers, Clinical Psychologists and Neuropsychologists. 

The Limb Service helps to coordinate the child/ young person’s rehabilitation needs by providing hands on medical and allied health services, and by providing advice and support to parents and families, local health professionals, teachers, and others who are involved in the care of these children and young people.

The Limb Service offers the following:

  • Outpatient clinics and appointments for therapy and medical review
  • Day rehabilitation services
  • School readiness
  • Outreach services, including home and school visits and community liaison.
  • Camp Lion Heart, an annual camp organised by the Kids Rehab Team for children with a disability aged between 7-12 years old. 
  • Referral to other specialist services e.g.Orthopaedics, Neurology
  • Referral to prosthetic and orthotic services.
  • Links to relevant community organisations (please see: “Useful Links” below).

Clinic

The Limb Clinic runs every second Monday morning in the Children's Assessment Centre on Level 3. In this clinic the patient is typically reviewed by a Specialist Rehabilitation Doctor, Physiotherapist and/or Occupational Therapist and a Social Worker.  Involvement of other health professionals is organised as required, such as Orthopaedic Surgeons. Paediatric prosthetists employed by private clinics are also invited to attend this clinic.

Clinic appointments involve looking at the child or young person’s current health, functional abilities and everyday life skills.  Following the appointment referrals may be made to other community services, for example, orthotics and prosthetics, local physiotherapy, occupational therapy, sporting and educational services.

Parents and carers are asked to attend the clinic with their child and bring any relevant school, medical or therapy reports as well as prosthetics and/or mobility aids to the appointment with them. Children and young people should wear comfortable, active clothing for their appointment e.g. shorts and a singlet. Treating therapists from the community are also welcome to attend or provide feedback for the appointment.

It is common for your child to have frequent appointments with the Limb Service in the first few years of their life, and then at important times in their lives such as starting daycare/ pre-school, starting school, starting high school and moving on to adult services.

Please follow this link to help you further prepare for your appointment.

Common diagnoses of the children we care for

Below is a list of some of the common diagnoses of the children we care for.

  • Congenital upper limb differences including:
    • Radial differences including those associated with VACTERL, TAR, Fanconi anaemia, Holt-Oram syndrome, Adams-Oliver syndrome and Robert’s syndrome.
    • Ulnar differences associated with Cornelia de Lange syndrome, ulnar mammary syndrome and ulnar fibular dysplasia
    • Amniotic or constriction-band related differences
    • Syndactyly or Symbrachydactyly
    • Split Hand (and Foot)
  • Congenital lower limb differences including:
    • Proximal Femoral Focal Deficiency
    • Congenital Short Femur
    • Fibular Hemimelia/Longitudinal Fibular Deficiency
    • Tibial Hemimelia
    • Posterior Medial Bowing of the Tibia
    • Femur Fibular Ulnar Syndrome
  • Acquired Limb Deficiencies after birth including:
    • Traumatic amputations
    • Amputations secondary to disease including tumours, meningococcal and sepsis

Intake criteria

We accept referrals from GP’s, Paediatricians or Paediatric Specialists for children residing in NSW with a significant limb difference. Typically this difference has an impact on the child’s function and therefore requires the care of a multidisciplinary team and the provision of adaptive technology including prosthetics to minimise the impact of the difference on the child’s function and participation in family, community and vocational activities. For example, this may include difficulties with functional grip in one hand, or severe lower limb shortening requiring a prosthesis.

Referrals may be emailed or faxed to the Kids Rehab Department (contact details above.) NB: we also accept referrals for antenatal consultations from fetomaternal medicine specialists. Please provide any imaging that is available.

If you are unsure if a certain diagnosis meets our criteria, please contact us to discuss.

NB: Children with additional digits (polydactyly), fused digits (syndactyly), or limb differences that do not require significant rehabilitation support are generally best cared for by the Congenital Hand Clinic or Orthopaedic Clinic. Referrals for these diagnoses can be faxed directly to the Orthopaedic Department at (02) 9845 2702.

For a referral to be accepted it must meet all of the following criteria:

  1. The child or young person has a health condition. (This includes ante-natal referrals where there is an anticipated health condition.)
  2. The child or young person lives in NSW or ACT.
  3. The child is aged 0-16 years, or is still at school if aged 17-18 years.
  4. The child or younger person, and/or their family, have goals that the Limb Clinic can help them achieve. (Consider whether this clinic has the resources and expertise to meet these goals or if another service is more suitable.)
  5. The child or young person requires assessment and/or management of their disability by a Paediatric Rehabilitation Medicine physician, in addition to medical services already in place?
  6. The child or young persons has need for multi-disciplinary medical, nursing, allied health or educational services.
  7. The child or young person is limited or restricted in any way in their ability to do the things most children of the same age can do?

How Does the Intake Process Work?

The referral to the Limb Service will be reviewed by the Intake Officer and discussed with the team to determine whether the child/young person is eligible for the service. If the child/young person has been accepted into the Limb Service they will be put onto the waitlist for a Limb Clinic appointment. Please be aware this process can take up to 2 months.

If you have an emergency or require urgent medical care please go to your GP, Paediatrician or Local Emergency Department.