Play abounds in the ePlayground

ePlayground island mapIf you are you looking for a free, creative and imaginative online computer game for your children to play then you may want to visit the ‘All Abilities ePlayground’.  Developed by Sonokids Australia, this game is an initiative of the Gold Coast City Council and supported by the Queensland Department of Communities (Disability Services).

The ePlayground features entertaining actions and four games – IbisBuster, Memory, TrixMix and Roo Hill Thrill.  The ePlayground can be played by children using one or two hands via use of a mouse, keyboard, touchscreen, trackball or joystick. If a child is unable to use both hands, he or she can equally participate in the ePlayground by way of switch access (which can be controlled using their foot, elbow or head) or Puff2Play (allowing a child to blow air into a normal computer microphone which imitates the use of mouse click).

The ePlayground is also self-voicing, as children are accompanied by their online game mate ‘BuddyFly’ who talks them through game instructions and provides tips along the way.

IbisBuster is an adventure game that also comes with a great story, whereby children collect different ‘good things’ and ‘shoo’ Iris the ibis who tries to steal them. Memory is a puzzle-type game with sounds and images where children are encouraged to find the matching pairs.  Trix Mix is a creative game with music and animations, allowing children to record musical sounds to a set beat and then re-play their own musical remix.  Roo Hill Thrill is an action game in a fantasy setting, where the gamer plays the role of a kangaroo and must surf over green hills and stay clear of beachballs.

The ePlayground offers an all-inclusive and safe play environment that stimulates imagination, skill development, independent play and cognitive learning. It also allows for children, their siblings and friends to play and interact together. The ePlayground was developed with the needs of all children in mind, and pleasingly the standard or adapted versions of the game can be enjoyed by children with varied abilities.  For all of these reasons ePlayground was a very worthy 2012 winner of the ‘Internet for Good Gold Standard Award’ (Asia Pacific).

While the ePlayground is an online game, it is actually the 17th official playground of the ‘Queensland All Abilities Playground Project’. The other 16 playgrounds are ‘real’ outdoor playparks located across Queensland; with the ePlayground an online representation of the inclusive play that children can experience in such playparks.

So, if your children are looking to play some new games why not get online and try out the All Abilities ePlayground – www.allabilitiesplayground.net.au

Meet the Limb Clinic Team at Sydney Children’s Hospital, Randwick

SCH SCHN LOGO STACKED RGBLimbs 4 Kids was privileged to speak with members of the Limb Clinic at the Sydney Children’s Hospital, Randwick; a clinic that works with children and families prior to the birth of a baby and right through to 18 years of age.  Limb Clinic members were able to talk about their roles, goals, ways they work with families and thoughts about developments in the field of limb difference.

Interviewed members of the Limb Clinic were Dr Adrienne Epps (Paediatric Rehabilitation Specialist), Margaret Patterson (Physiotherapist), Laura Sidharta (Social Worker) and Leslie Wollin (Occupational Therapist and Limb Clinic Coordinator).  Unfortunately other integral members of the team – their specialist Paediatric Orthopaedic Surgeon, Geneticist and Plastic Surgeon – were not available to take part in the interview.

In the context of children with limb difference please explain what each of your roles are?

The Limb Clinic is comprised of a collaborative group, with each holding a specific role that relates to their area of specialty.  The following summarises the roles of each member who took part in this article. The Limb Clinic is held every two weeks, and members of the team identified as required for the assessment and review meet with attending families and children.

Rehabilitation Doctor

Dr Adrienne Epps is a specialist with a particular focus on childhood limb difference and the functional implications for each child.  In her role, Dr Epps conducts an overall assessment of a child’s condition and function as well as an overall assessment of a child’s family and their needs.  Dr Epps is the manager of the Limb Clinic and works with all members of the team to develop a Management Plan for each child.  Dr Epps’ responsibility is to assist children with limb difference to achieve functional goals and ensure they are supported by the Limb Clinic team throughout their childhood.  Dr Epps, and members of her team, also work together to identify and support children to be fitted with appropriate prostheses and assistive devices that enhance children with limb difference to become confident, active and participating members of the community.

Physiotherapist

Margaret is the Limb Clinic’s Physiotherapist who assesses each child’s mobility and motor skills, developing exercise plans that assist children with their gait and body movement training. Margaret provides families with information about what to expect during key physical development milestones and assure parents that their child will develop to their potential.  Other roles include pre amputation assessment, exercise prescription and counselling, post amputation follow up, rehabilitation and prosthetic gait training.  Margaret also assists in identifying local Physiotherapists and Prosthetists to work with children, particularly if the family comes from regional or remote areas.

Social Worker

Laura is the Limb Clinic’s Social Worker, providing emotional and practical support to children and their families.  Laura provides counselling to families in the adjustment of the child’s limb difference and assists them to better understand what support is available to them whilst in hospital and upon return to their home communities.  Assistance includes specific support during key transition points (such as starting school), the preparation of government and school forms, and guidance should specific issues emerge (such as body image, self-esteem).

Occupational Therapist

Leslie is not only the Occupational Therapist but is now also the Limb Clinic Coordinator.  As an Occupational Therapist, Leslie assists children to maximise their abilities and learn to undertake everyday activities at home, at school and in the community.  In addition, Leslie also assesses and supports the prescribing of upper limb prosthetic equipment and assistive devices that facilitate a child’s participation in everyday life.  Leslie also liaises with schools and community organisations so that these can best understand a child’s needs and, where required, how the setting can be modified to accommodate a child with limb difference.  The Limb Clinic Coordinator role is a new one within the hospital with Leslie the first person to hold this important role.  As the Coordinator, Leslie assists families to understand what the Limb Clinic does,  triages new referrals and ensures children and families are able to see necessary medical and allied health specialists within the service.  As the role develops, it is hoped that the co-ordinator role will provide a link between hospital services and community organisations and supports the development of clinical services to support children with a limb difference and their families.

Can you explain what a ‘multi-disciplinary’ approach to health care means and why it is so valuable and important for children and young people with limb differences?

The Limb Clinic is underpinned by a multi-disciplinary approach; a methodology which combines a number of factors. Multi-disciplinary means bringing together different disciplines and health professionals with different areas of expertise to assess the child and together make recommendations for the management of the child. It means that the professionals can assess and discuss a child’s condition in clinic together to address the comprehensive needs of the child so they don’t have to go to different professionals and appointments. It makes it easier for the child and family by reducing the number of appointments on different days and helps communication with members of the treating team.

What does ‘early intervention’ support mean and why is it so important for children and young people with limb differences?

Early intervention incorporates a number of approaches underpinned by an overarching goal “that all children reach their full potential”.  Dr Epps sees early intervention as an approach that incorporates putting the necessary physical, psychological and social supports in place, and providing families with diagnostic information and plans early in the child’s and family journey.  Dr Epps views early intervention as a way of also ensuring that families receive the correct information as soon as possible, thus minimising the possibility of families receiving incorrect information, for example from the internet.  Early intervention allows experts within the Limb Clinic to provide a common message to families that “their child is going to be OK and that, by working with you and your child, we expect full participation in life and the community”.  Early intervention also enables the team to identify any issues that may be holding a child back from reaching their full potential and intervene to minimise or mitigate the issues. In addition, early intervention includes connecting families with one another so that they know they are not alone.

A patient-led approach doesn’t just involve the children and their parents, but also their family members.  Can you explain how you work with siblings and extended family members?

Members of the Limb Clinic consider siblings and extended family members to be important members of a child’s life. Having other members of the family attend Limb Clinic meetings allows for those individuals to ask questions, better understand limb difference and identify ways they can assist the child.  As part of a child’s Management Plan, members of the Limb Clinic team also identify if siblings need specific assistance or if they can be incorporated into the overall plan.  The Limb Clinic noted that older siblings sometimes need assistance, particularly in the areas of better understanding their brother or sister’s limb difference or needing specific counselling.  In addition, the Limb Clinic supports siblings to develop scripts they can use when speaking to others about their brother or sister’s limb difference; something that they have found can reduce sibling anxiety.  The team have also found that including siblings in therapy can be extremely beneficial, as siblings learn how to engage with their brother or sister when playing sports or games and normalising the limb difference in their family.

Why did each of you choose to work with children and young people with limb differences?

Dr Epps chose to work in this field as it is a medical area that provides great job satisfaction, allows for cross-disciplinary collaboration, enables her to see the continuing progress and development of a child over time and celebrate their achievements.  Margaret enjoys working with her colleagues and learning from their various expertise while also being able to support inspiring children and families.  Laura appreciates the opportunity to assist children and families to access support both inside and outside of the hospital, and provide ongoing practical and emotional support while a child moves through key childhood milestones. Leslie fell in love with it as an area where she could support families and children to achieve all they can do and work in a field experiencing advancements in technology and componentry.

How do you assist children who experience ‘fears or worries’ during appointments?

Fortunately, the Limb Clinic doesn’t tend to see many children going through negative experiences during appointments. Where a child does have any concerns, the team talk to parents prior to the appointment to better understand the underlying issue and identify ways the issue can be addressed prior to and during the visit. For example, a child might be scared about coming to the hospital because it represents where they had previous surgeries or interventions; in which case the team works with the family to reduce associated fears. Sometimes a child may feel worried because of the number of Limb Clinic staff in a meeting, in which case they try to reduce the number of staff to a minimum.  The provision of toys and fun activities is also a good way of distracting children, particularly if they are very young.  The team also encourage each child to take an active role in the discussion.

Do you offer peer support to families just commencing on the limb difference journey? 

The Limb Clinic consider themselves very fortunate as they have many parents of children with limb difference willing to speak to and support other families.  The team views peer support as a great way for families to share experiences, provide tips and encourage each other.  Sometimes the team will contact ‘experienced’ families and ask them to speak to another family, while at other times it occurs because a families informally meet in the waiting area.  The team also refer families to Limbs 4 Kids and Aussie Hands on a regular basis.  The team also wanted to thank two young people with limb difference, and their families, who have provided significant support to families and Limb Clinic staff over many years. Sarah Walsh, who was born with a congenital leg difference, and her mum Patricia have provided enormous support to other families over many years and are called upon by the team on a regular basis.  The team also expressed gratitude to Jake Widjaya, who was born with a hand difference, and his parents for the role Jake has played in promoting the Limb Clinic and sharing his story with other young people and their families as well as in his Conference participation that assists with the professional development of staff and colleagues.  It is worth noting that Limbs 4 Life has had wonderful support from both of these young people and their families also. 

Are there developments in the field of childhood limb difference, prosthetics or other areas that excite and interest you?

The Limb Clinic team members expressed excitement in a wide array of areas, ranging from research through to componentry, feeling that these areas can enhance children’s ability to reach their full potential.  Dr Epps advised that the team is working with the NSW prosthetic funding body, ‘Enable’, via robust research that will hopefully lead to the provision of high performance prosthetic feet for children.  Leslie is excited by myoelectric prostheses for children with upper limb differences as she has seen the positive outcomes it has for children, but as these are quite expensive she is hoping to see government funding make these prostheses more widely available.  Margaret has witnessed the positive outcomes that micro-processor knees have for young people with above-knee limb differences, and hopes to see funding increase so that all suitable children have access to this componentry.

Is there any critical information or advice that you give to all children and young people living with limb difference and their families? 

Most importantly the Limb Clinic team advises parents to take a positive approach, to normalise expectations as much as possible and encourage their child with a limb difference to participate in all the usual everyday activities and things that interest them and to achieve whatever goals they set for themselves but it might just be in a different way to other children.  The team recommends that parents don’t restrict their child’s life and allow them to participate in as many opportunities and activities as is possible.  Finally, they want to remind parents that Limb Clinic members are available to talk with families any time, as the team is on the same journey with each child and family.

Do you think the Limbs 4 Kids program and resources are beneficial?  

The Limb Clinic team said they have confidence in the Limbs 4 Kids resources, and frequently share them with families.  The team feel that the resources are well structured, flow well and of great benefit to families and community members.  The team said that parents are often provided with a significant amount of information during a Limb Clinic appointment, and the provision of Limbs 4 Kids Fact Sheets, magazines and website allow for parents to digest information in their own time.

After working with children (and their families) over a significant period of time, how does it feel when they reach adulthood and you will no longer be working with them? 

While saddened when a young person reaches 18 years of age and it is time for them to move into adult services, the Limb Clinic team are also pleased because they are there to see their transition to adulthood.  The team also felt it is a rewarding and humbling experience, as it means they have played a part in assisting young people to develop independent skills and confidence which prepares them for adult limb difference services.  The Sydney Children’s Hospital, Randwick also holds a bi-annual ‘Graduation Ceremony’ for young people who have been part of their services over the years.  The Graduation Ceremony provides a chance for patients and families to say goodbye to teams of clinicians who have cared for them for so long, many since birth, and provides staff the opportunity to formally farewell young people, wish them well and celebrate their successes.  The Limb Clinic staff said that some young people stay in touch, but it tends to diminish over time which is a positive reflection that the young person has developed independence and is no longer dependent on the hospital.

Do you have any final comments related to working with children?

The Limb Clinic team all agreed that a very refreshing and enjoyable aspect of their job is how honest and funny children can be.  They also agreed that they feel privileged to see children’s personalities grow over the years, achieve personal goals and watch them mature into independent young adults.

Limbs 4 Life would like to thank the members of the Limb Clinic at the Sydney Children’s Hospital, Randwick for taking the time to be interviewed.  In addition, Limbs 4 Life would like to congratulate and thank the team for the wonderful work they do in supporting children with limb differences and their families.

Össur Mobility Clinic

Össur, one of the world’s leading orthopaedic and prosthetic manufacturing companies, recently hosted Australia’s first ‘Mobility Clinic’ for lower limb amputees and children with limb differences.  Held in Brisbane in September, this event combined a mix of presentations and physical activities as well as opportunities for participants to connect with other amputees of all ages and abilities.

Mobility Clinic 6This successful event saw 62 adult and 15 child participants enjoy the chance to build overall mobility skills under the guidance of the world’s leading expert in amputee rehabilitation, Professor Bob Gailey from the University of Miami.  Professor Gailey is a physiotherapist, author, researcher and lecturer with a passion for assisting amputees and children with limb differences to build mobility confidence and skills.

Professor Gailey, known as Bob, was a passionate motivator who took the time to get to know each participant and provide them with personal advice and encouragement.  Hearing Bob say “you can do it”, “don’t be afraid to try” and “well done, I knew you would achieve that” to individuals illustrated not only Bob’s interest in each participant but highlighted the intimacy of the event.

The Mobility Clinic also included the involvement of physiotherapists, prosthetists and parents who had the opportunity to build upon their own knowledge and work one-on-one with adult amputees and children with limb differences.  Over the course of the two-day event improvements in mobility, balance, speed and confidence was evident amongst all participants.  As one therapist said “I feel so privileged to have been part of this event, support amputees, meet new people and learn some new tips I can use when working with my patients too”.

Mobility Clinic 4Individual videos were taken of participants enabling Bob to personally evaluate each individual’s gait patterns.  Bob then provided each person with tips and exercises aimed at enhancing their mobility, walking, balance and/or running skills.  When reviewing the videos of children, Bob was overawed and enthused by what he witnessed.  Bob remarked that “my American counterparts should be nervous about the future Australian Paralympian Team, as there are many children and young people here who already possess the skills to become Paralympic champions of the future”.

Harvey Blackney, Regional Director of Össur Australia, said “It was an absolutely wonderful two days, seeing some people achieve things they never though they could. It was also tremendous to have people from around Australia come and enjoy the days with Bob, improve their performance and ultimately live life without limitations.”

Limbs 4 Life would like to thank Össur for hosting the Mobility Clinic and allowing us to be an event partner.  In addition, we are extremely grateful to Össur for the very generous donation made to Limbs 4 Life; a donation that will allow us to continue to support Australian amputees and people with limb differences.

Let’s go surfing … with the Disabled Surfers Association of Australia

DSAA Photo #2The Disabled Surfers Association of Australia (DSAA) are a volunteer-run organisation that enable people of all ages and abilities to take part in one of Australia’s most popular past-times, beach surfing!  Your family might want to consider attending one of their events after reading about amputees who are engaged with the DSAA as well as the vision, commitment and safety the organisation puts in place at each of their surfing events.

The Disabled Surfers Association was established in 1986 by Gary Blaschke after a traumatic accident which saw him undergo extensive rehabilitation.  As a surfer himself, Gary saw that many surfers who developed a disability or condition then felt they couldn’t return to the water as they didn’t have support to do so.  Gary also felt that many people with disabilities, who had never surfed before, should have an opportunity to try out the sport he is so passionate about.  As a result Gary, and his supporters, started DSAA to allow people to surf under the supervision of trained volunteers.

Over many years people with all classes of disability and conditions, including amputees and children with limb difference, have been able to enjoy surfing.  Indeed, some amputees are volunteers within DSAA, and this article includes feedback from amputee volunteers and participants.  The DSAA has set an international best practice model for disabled surfers.

The DSAA have 14 branches across most states in Australia, and have even branched out into New Zealand.  The DSAA have hundreds of volunteers who are trained to work with people with disability both in and out of the water.  Each event includes Beach Marshalls who oversee the event, Team Leaders who coordinate groups of participants and volunteers in the water, and other volunteers who coordinate participant sign-ins and post-event BBQs and get togethers.

Volunteers supporting people in the water undertake ‘Train the Helper’ and first-aid training so that participants are well supervised and provided with support that accommodates their needs.  Participants include people with a variety of disabilities and conditions ranging from joint problems, paraplegia, intellectual and neurological impairments, and limb difference; so volunteers are very competent at supporting people with a variety of needs and abilities.

Each branch is run by a volunteer Board of Management which ensures that their branch is well structured, that volunteers are regularly trained and they are providing exciting beach events during the summer time.  The DSAA also take out considerable insurance, which is quite costly and very important when it comes to the provision of water activities, to ensure that participants and volunteers are protected.

Ian Gay, President of the Gold Coast DSAA branch and passionate surfer, said that “safety and fun are the key priorities of our organisation and we get such a buzz seeing people enjoy their time in the water.  Some of our participants have been coming to events for years, while others are just starting out and beginning to learn to love getting out in the water on a surfboard”. In addition, some participants and/or their caregivers also train to become volunteers over time.

At the end of each event, some branches give out awards to participants to recognise the achievements gained.  Ian said that his branch offer out awards such as ‘Best Surfer’, ‘Best Wave’ and ‘Biggest Smile’, to name but a few.  Importantly, the end of an event is a chance for everyone to get together, chat about how much fun they’ve had and meet new friends.  “It’s a really supportive and inclusive environment for everyone,” said Ian.

Bruce Peel, an amputee and member of the Limbs 4 Life community, is extremely involved in DSAA.  Bruce, who is paralysed in one arm and an above-knee amputee, has been involved in the Western Australian DSAA group for 11 years and is also the Vice-President of the National DSAA Board.  “The advantage of being an amputee and surfing is that once you are in the water your disability disappears as you are weightless.  Being in the water is good for the soul and it’s wonderful to smell the water because you are in it rather than only smelling it from the beach,” highlighted Bruce.

Bruce is passionate about children and young people trying out surfing.  “We’ve had many young people with limb differences take part across Australia over the years, and I can assure parents that the safety of children is critical to us.  Equally important is building confidence in water; so if you attend an event you will hear very loud cheers from volunteers and other participants when children overcome fears,” expressed Bruce.

Holly Franklin, an upper-limb amputee and member of the Limbs 4 Life community, began as a participant “surfer” at the Gold Coast DSAA branch in January 2012, but switched to a volunteer role in late 2012.  Holly began attending events, saying “I wanted to learn to surf but wasn’t sure if a regular surf school would suit my needs as an amputee”.

DSAA Photo #3As an amputee Holly sees DSAA events as extremely beneficial for both children and parents, and said “you gain confidence in your abilities, develop a respect for the ocean, join a community of support and encouragement, and can gain access to the beach without using a prosthesis.  It’s also really safe, as each participant has a number of volunteers surrounding them in the water to ensure that nothing, except the odd dunking, will go wrong”.  Holly also feels that parents get a chance enjoy watching their children build skills as well as have the opportunity to engage in informal peer support and comradery with other parents.  “DSAA focuses on safety and smiles, so parents can relax while their kids can try an activity that they (the parents) might otherwise not be willing or able to do without the support of the DSAA,” said Holly.

For more information about DSAA, local branches and dates of upcoming events visit their website at www.disabledsurfers.org. You are also encouraged to contact the local branch if you have any questions or want to RSVP for an event in your area.  You can also visit the Limbs 4 Kids website calendar where upcoming DSAA events are also listed.

If your child is considering attending an event and wears a prosthesis, because it is a beach activity, it is a good idea to speak with your child’s prosthetist to ask about whether the prosthesis can be worn on the sand and/or in the water.   Unfortunately, if sand gets into your child’s prosthesis it may cause damage to the functionality of the components so it is a good idea to check before going to the beach.  Your prosthetist may be able to advise of ways of ensuring your child’s prosthesis isn’t damaged or compromised, or recommend an assistive device (such as crutches or a wheelchair) so your child can be transported on the beach. Alternatively ‘water legs’ may be available. Water legs (specifically designed for use in the shower, swimming pool or beach) are completely covered so the effects of the sand and salt water do not have an impact on prostheses, and may be used for surfing or beach based activities. Again, speak to your prosthetist for professional advice.

Thanks to DSAA for allowing us to interview members and learn more about the great work this organisation does in the community. Thanks also to Looks Like Me Surf Photography for the great images of DSAA events.

Award winning photos of children with limb differences

Child photography is a regular feature of professional photography awards but, until recently, images of children with limb differences had not been.  That was until Melbourne-based photographer Zaharoula Harris met five-year old Alex.

Alex PhotoAlex, who was born with bi-lateral limb differences which resulted in amputations of both feet when he was just a toddler, is well known in the Limbs 4 Kids community.  Alex, along with his parents Allison and Marta and twin brother Mark, is child who is full of beans.  Alex plays an array of sports, recently received his first set of running blades and already aspires to represent Australia as a Paralympian in the future.  Like most parents Allison and Marta have sought to capture their twin boys as they grow, which led them to meet with Zaharoula for a family photo-shoot.

Not only did the family receive stunning photos but a particular image of Alex stood out as one that not only captured his personality but was of such high quality that Zaharoula thought it worthy of entrance into the ‘Victorian Professional Photography Awards’.  The photograph scored a ‘Silver with Distinction’ at these awards, with the judges commenting that they were all drawn to the courageous look in Alex’s face well before they even noticed his missing limbs.  The success of Alex’s photo resulted in Zaharoula being invited to enter into the Australian Professional Photography Awards.

Milla PhotoIt was at this point that Zaharoula thought she would like to photograph children with limb differences and use her lens to “share their beauty and stories with, not only families, but the wider community”.  Zaharoula contacted Limbs 4 Life to enquire whether we could put a ‘call out’ for two other Melbourne-based families to have portraits taken of their child.  Two families responded to the call and had wonderful photos taken of their beautiful children Milla and Angus.

Angus PhotoMilla, who was born with a congenital lower limb difference that resulted in an amputation when she was a toddler, is a gorgeous and captivating little girl who features in a number of Limbs 4 Kids materials and videos.  Angus, who is nearly nine and had his foot amputated as a result of an infection, is a determined and tenacious boy who is amazing everyone with how quickly he is recovering from his very recent amputation.

In reflecting on the photo-shoot, Zaharoula said “I felt quite nervous photographing the children as the most important thing to me was that the parents would look back and fall in love with the images”.  The day of the photo-shoot was a great success “full of fun and laughter”, providing Zaharoula with an opportunity to learn more about Milla and Angus.  It also allowed Zaharoula to present their families with an array of beautiful pictures of their children.

Zaharoula and her colleague Lisa Saad (who, incidentally, took out the 2015 Australian Commerical Photographer of the Year Award) worked collaboratively to develop two breathtaking images of Milla and Angus that both sets of parents “were thrilled with”.  Along with the photo of Alex, all three images were entered into the National Awards held in October.

The competition, which is an extremely competitive Australian-wide award, saw Zaharoula receive‘Silver with Distinction’ for her photo of Alex.  The photos of Milla and Angus did not receive awards but Zaharoula feels that “those photos are ‘gold rated’ in my eyes and, no doubt, in that of their parents also”.  Indeed, Zaharoula would like to continue taking photos of all three children as they get older.

While Zaharoula has been photographing for over 30 years, prior to taking it up professionally six years ago, she worked in the area of disability with the Victorian Department of Human Services.  In reflecting on both her previous and current professions, Zaharoula said that “over the years I had the pleasure of meeting many people with a variety of disabilities, and what is important is that you see the person first and foremost.  That is the same with photography, you try to use the lens to capture the essence of the person first and foremost”.  Indeed, it was that approach Zaharoula felt enabled her to take beautiful pieces of art featuring Alex, Milla and Angus.

Zaharoula is keen to work on a book with the Limbs 4 Kids program that will assist in raising awareness of children with limb differences and, as she says, “assist a small organisation like Limbs 4 Life to continue to offer support to parents when they need support the most”.

Limbs 4 Life congratulates Zaharoula on her recent photography successes, and thanks her for taking the time to support the Limbs 4 Kids community and her ongoing commitment to improving outcomes for children with limb differences.

For more information about Zaharoula visit www.zedphotography.com.au

Cameron Ward, Prosthetist (APC Prosthetics)

Cameron Ward PhotoWhat are your qualifications?

I completed a Bachelor Degree in Prosthetics and Orthotics at La Trobe University.

Why did you choose to study prosthetics and how long have you been working as one?

I wasn’t sure what I wanted to do when I finished school but, when investigating future careers during Year 12, my Careers Advisor identified prosthetics as a potential pathway for me.  I then visited La Trobe University and decided that I might be suited to the profession.  As it turned out I did love this profession from the outset.  I undertook my final practical placement with APC Prosthetics in New South Wales and was offered employment there upon my completion.  I’ve now been working for APC Prosthetics for 16 years.

Describe the clients you work with?

I work with people with upper and lower limb deficiencies, ranging in age from 6 months old to well into their 90s.  While I enjoy working with all of my clients, supporting children is very rewarding because of their attitude and ability to try anything!

What role does a Prosthetist play in supporting children with limb differences?

Prosthetists play a really important role in trying to match what the child needs and wants with a prosthetic socket and components that best enables them to engage in all the fantastic activities kids do.  When a child wants to do something and can’t because of their limb difference I see the Prosthetist’s role as finding a solution that can allow them to achieve their goals.

What is the step-by-step process involved in fitting a child with a prosthesis?

The first appointment is usually to take a cast, followed by a first fitting and any follow up adjustments that need to be made.  Over the life of the prosthesis it often needs adjustments such as lengthening as the child grows.  Once these adjustments are no longer possible then a replacement socket or entire new limb is made depending on the condition of the components of the prosthesis.  As children are very active and adventurous, their componentry never lasts very long as they are always outgrowing them or breaking them!

What role do you play in supporting the families of children with limb differences?

I’m there to answer the many questions parents and family members have.  Information is critical as are providing chances for children and families to connect.  The new Limbs 4 Kids program and publications are great as it provides a great mix of information, individual stories and chances to connect.

What multi-disciplinary healthcare professionals do you work with to support to children with limb differences?
I work with an array of experts that generally include a Paediatric Rehabilitation Consultant, Physiotherapist, Occupational Therapist and others as required.

Why is early-intervention support important for children with limb differences?

The earlier a child uses a prosthesis the more likely they are to accept it and use it throughout their life.  In congenital limb differences cases, regardless of whether it is upper or lower, early-intervention can be really important to help the child meet their milestones and keep their spine symmetrical; which enhances their lifetime physical wellbeing.

What information do you give to all children with limb difference and their families?

I recommend that they keep seeing the rehabilitation team because even if the prosthetic side of things are sorted, there are often other areas of a child’s health that the clinic can assist with.

What current developments in the field of prosthetics excite you?

I’m excited by three key things – the NDIS, running prosthetic advances and myoelectric hand advances.

As the NDIS is rolled out, the funding should provide children with more appropriate prosthetic technology.  As the NDIS will cover all people under the age of 65 we should see funding for secondary recreational or waterproof limb being available.  As we are based in NSW, where the NDIS is being trialled in Newcastle, my organisation is already seeing some fantastic outcomes for amputees and people with limb differences in that region.

Carbon fibre feet and running blades have come a long way in the last 10 years and, even more excitingly, they have become more accessible to everyone wanting to run and not just athletes.  This is particularly important for children because it gives more opportunity for children with limb differences to keep up with (and sometimes beat!) their mates at school.

There has been considerable research and improvement in myoelectric hands in recent years, and I am really excited about the significant opportunities this will present for children and adults with hand limb differences in the future.

What is the Bandaged Bear Appeal?

Five years ago APC Prosthetics decided to hold an annual Bandage Bear Breakfast fundraiser which raises funds for the limb deficiency clinic at the Children’s Hospital at Westmead (Sydney).  It is a fun morning where we try and have as many of our kids come as possible.  We try and have a Bandage Bear Ambassador and this year had the bandage bear himself!  APC Prosthetics provides the catering, face painting and venue.  Each year we raise close to $10,000 and are always looking for more people to attend and donate.  Our 6th Bandage Bear Breakfast will be held in March 2016 and we hope some of the Limbs 4 Kids community can join us.

Any other tips for families?

Yes, one of the things families should look out for is the AMP Camp, which is held in NSW in March of each year.  It is a camp that the Amputee Association of NSW help to support and allows children with limb differences between the ages of 12 – 18 to meet one another and participate in a range of activities.  One of our older above-knee clients organises the event and I volunteer as a leader each year.  It’s a fun social event and many of the teenagers return each year to catch-up, participate and some have gone on to become leaders themselves.

Patrick McQualter, Prosthetist (Orthodaedic Appliances)

Patrick McQualterWhat is your qualification and why did you choose Prosthetics as your post-school career pathway?

I completed a Bachelor of Prosthetics and Orthotics at La Trobe University in 2005. I chose this field as I enjoyed subjects like woodwork and graphics at school and also wanted to undertake a health related course because I’ve always gained satisfaction helping others.  Prosthetics allows me to use my hands, tap into my creative side while also helping to improve the quality of life for others.

Would you recommend this as a career to young people currently thinking about their post-school pathway? 

After graduating from University I worked as a Prosthetist in Sydney for two and a half years. I then returned to Melbourne and have been working at Orthopaedic Appliances in Fitzroy (Melbourne) for the past seven years. As was the case with me, future students have to prepare for the possibility of moving interstate for graduate employment. One of the advantages of the program is practical placements, something that allowed me to explore a variety of options and ‘learn on the job’ with a range of organisations. My employer Orthopaedic Appliances offers placements to students as we all believe it is important to support both La Trobe University and industry members of the future.

Describe your clients?

I work with upper and lower limb difference clients of all ages.  My youngest patient is a one year old and my oldest is 98, who had his foot amputated when he was just three.

What makes working with children enjoyable?

Kids always have such a positive attitude no matter what they have been through, and it never ceases to amaze me what they are able to achieve! I’m privileged to be a big part of their lives and watch them grow from kids into adults.  Knowing that I’ve made a difference in the life of a child or young person is very rewarding. I also love and laugh at the very funny things kids say and do during appointments!

How does working with children differ from working with adult amputees?

The main difference between working with children compared to adults is that kids are still growing. This means more frequent appointments and new prostheses. You are also working with, and often communicating through, the parents rather than the one-on-one communications you have with adult patients. In general children and young people are also very active and therefore tend to break their prostheses a lot quicker than adults!  Working with children does pose some challenges.  Because of their size and the fact they are still growing we do have limitations in terms of the componentry available to children and reduced space below the residual limb to fit prosthetic feet.  However, as children grow these limitations generally diminish over time.

What role does a Prosthetist play in supporting children with limb differences?

As a Prosthetist you become more than just a limb maker. As we see these kids and their parents so often we are also there to provide emotional support and advice. We can also assist in connecting children and their parents with other kids or adults with similar congenital or acquired limb differences. Often I will arrange appointments so that kids with similar limb differences can attend at the same time as this allows them to meet, share stories and relate to someone else who is in the same situation.

How do Prosthetists and Technicians work together to build a prosthetic limb?

The first stage in fitting a child with a prosthesis is to measure them up and take a plaster cast of their residual limb. The Prosthetist will then modify the cast and prepare it for the manufacturing stage. The prosthetic socket will be laminated by one of the five technicians we have at Orthopaedic Appliances. Any components, including knees and feet, will be ordered in from suppliers. The Prosthetist will then connect the socket to the components, align the prosthesis and fit it to the patient. A second cosmetic lamination is then often required before the child takes the prosthesis home.  Many children will choose their favourite cartoon character, football team or artwork to personalise their prosthesis – so we support kids to bring their creative imaginations to life!

How do you assist children who experience fears or worries during appointments?

I try to have fun with the kids during their appointments and reassure them that they have nothing to be scared about. If all else fails the TV is a good distraction and lollies are a good bribe!

What current developments in the field of prosthetics excite you?

The constant advancements in microprocessor controlled prosthetic knees and ankles is very exciting, which will hopefully be more accessible to children in the near future.

Why is early-intervention and the Limbs 4 Kids program beneficial?

I think the work that Limbs 4 Kids does is of great value to all of my young patients and their families.  The importance of early-intervention cannot be understated as it allows kids to know they are not alone, enables them to share experiences and learn tips from each other.

Is there any critical information or advice that you give to all children using a prosthesis (and/or their parents)?

My main advice to parents is “Let them be kids!”  Parents shouldn’t be afraid of their child breaking their prosthesis as we can always make another one.

Prosthetists and Orthotists of the future (La Trobe University students)

Latrobe Student Cynthia

Limbs 4 Life caught up with two students currently studying the Master in Prosthetics and Orthotics at Melbourne’s La Trobe University to find out what their future had in store.  Emma Davis is a fourth year student and will complete her qualification in September this year. Cynthia Delinac is currently in the second year of her studies.

Why the interest in a career in the field of prosthetics?

Emma: I always felt drawn to the area of health and working with other people. I grew up being exposed to the health industry as my Mum was a nurse; I just wasn’t sure which area of Allied Health would suit me best.

Cynthia: Since I was young I have had an interest in both helping people and construction.  Although I was interested in construction I couldn’t see myself working as a tradie, and I didn’t think there was a career that could combine my two interests.  But, when I was in Year 11 I attended an Open Day at La Trobe University and was exposed to the Masters in Prosthetics and Orthotics program.  Immediately, I found the course for me!  I made sure to select subjects in Year 12 that were pre-requisites for the program and was thrilled when I was accepted after finishing school two years ago.

La Trobe Student EmmaWas there one defining moment that led you to make the decision to study prosthetics and orthotics?

Emma: I was actually leaning towards Speech Pathology when I went to help out at my child’s local school. In my role as a Teacher’s Aide the very first child I provided support to was wearing a Halo Brace. This inspired me to look into the various Allied Health courses on offer at La Trobe University (I previously studied Arts) and decided on Prosthetics and Orthotics. I’m creative by nature and loved the idea of problem solving in a ‘hands on’ way. Prosthetics and Orthotics seemed like a much better fit than any of the other allied health courses.

Cynthia: Attending the Open Day, and doing further research into the profession, was a very defining moment.  However, I was also strongly influenced by my own personal experience of orthotics.  I have Scoliosis (curvature of the spine) and during my teenage years wore a Boston Brace to treat this condition.  This necessarily meant that I attended the Royal Children’s Hospital and worked with an Orthotist, who oversaw my treatment and fitting of the Brace.  After I identified the Masters in Prosthetics and Orthotics program as my post-school pathway I then discussed the course in more detail with my Orthotist and felt even more confident that I was choosing a program and career that would suit me.

What do you hope to get out of working in the industry?

Emma: I really want to help people get their independence back, regain their mobility and function.  During my first placement, I had the opportunity to see the difference an orthotic device made to clients’ wellbeing and mobility, so I’ve already had the opportunity to see some good outcomes.  I really love the variety that my job will provide. No two clients will be the same, so I expect that each day will provide new challenges and opportunities.

Cynthia: I hope that, once I am qualified, I will be in the position to assist people to achieve their goals in life.  I’m particularly interested in working with children because I understand, from personal experience, how critical quality early intervention support is.  Addressing the physical needs of children and providing them with treatment and devices that will make them more confident, comfortable and independent is really important.  Next year (3rd Year) I will start my industry clinical placements, which will be a mix of prosthetics and orthotics, and I’m hoping to be placed at the Royal Children’s Hospital at some stage.  At the moment I’m leaning towards orthotics, but that may change after I’ve done placements and formal training in prosthetics.

How has the course prepared you for the role?

Emma: The course has been great as it has given me an insight into what I can expect and I’ve also had the opportunity to work with a number of volunteer patients.  It’s been interesting listening to them and hearing their needs, their stories have been really inspiring too.

Cynthia: In the first two years our education focuses on anatomy, physiology, biomechanics and allied health matters.  More recently we have started to enter into the design, fabrication and construction of devices which I am absolutely loving.  We have also had some fantastic amputees come into our classes to talk about their amputation, rehabilitation and clinical experiences.  These people are so generous in giving their time to talk to us students, share their personal stories and allow us to act in the role of clinician and ask formal questions. Asking questions of amputees has really helped me to be client focused and understand the importance of that.  I know that will greatly help me during my upcoming placements and when I’m working in the ‘real world’.

Is there any particular area or patient group that you would like to manage?

Emma: It is hard to pick one area at this early stage in my career and I’d like to remain open to all areas of Prosthetic and Orthotic patient careMy first placement was at the Royal Children’s Hospital (Melbourne) which is fairly specialised.  I really enjoyed that experience although initially I was a little bit concerned (being a Mum myself) about seeing and working with children experiencing difficulties.   It didn’t turn out to be a problem at all though and was a great first look at the professional side of Prosthetics and Orthotics.

Cynthia: In addition to wanting to work with children, I have also been thinking about working in some developing countries.  I know there is a desperate need for qualified Prosthetists and Orthotists in many third-world countries and I would like to offer my expertise and skills in those regions.

Do you have a particular interest in upper or lower limb amputees?

Emma: I think the developing technology of myoelectrics is fantastic and I am very interested in how it is helping to restore and/or provide function to upper limb amputees.  The movements and functions performed by the hand are so complex, to think research is getting closer to being able to replicate it is very exciting.

Cynthia: If I move into prosthetics I think I would like to work with lower-limb amputees. I think that assisting people to ambulate (walk) safely and regain independence would be very satisfying for the patient and rewarding as a clinician.

Given that technology is changing all the time, how do you think you can influence changes in funding that lead to positive outcomes for patients?

Emma: Some of the high end prosthetics are far out of reach for most patients and the current system doesn’t support funding for these components. I hope that the NDIS (National Disability Insurance Scheme) will help to address these financial gaps.

Cynthia: While technology may increase costs, I think it is important that prostheses and orthoses are made accessible to all people as that will assist people to live productive and healthy lives.  Amongst the students we have been talking about 3D printing technology recently and some are worried that the increased use of 3D printers might lead to less jobs in the profession in the future.  However, I don’t think that will be the case as there will always be a need for qualified clinicians to develop treatment plans and fit devices regardless of the technology used.  I think it is an exciting time that we are entering into really.

Are there any other comments you would like to share?

Emma: Meeting a number of amputees through our course I’ve heard a few stories about their experience of pain and how it affects their lifestyle and mobility. I would like to think that sometime in the future I might look at conducting some research about this and how pain influences their mobility outcomes. I’m very excited to begin my career in this industry as there is a lot of scope to make your mark!

Cynthia: I just want to tell others that the course at La Trobe University is a really interesting and important one.  If anyone is thinking about this as a career they should think about attending an Open Day or speaking to the lecturers there.  I also want to thank all the amputees that come and talk to us students and let them know that we really appreciate and benefit from them sharing their stories with us.  Oh, and thanks to Limbs 4 Life for letting me contribute to this article.

Prof. Leo Donnan, Orthopaedic Surgeon

Leo DonnanAssociate Professor Leo Donnan graduated from the University of Melbourne in 1986 subsequently training in Orthopaedic Surgery obtaining his Fellowship of the College of Surgeons in 1994. Over the next few years, Leo undertook a number of international research studies such as bone formation implantable intramedullary lengthening devices and deformity correction, as well as developing medical video-based educational material for medical students and surgical trainees in paediatric orthopaedics.

On return to Melbourne he was appointed to a consultant position at The Royal Children’s, St Vincent’s and Royal Melbourne Hospitals and became Director of Orthopaedics at The Royal Children’s Hospital in 2004. Leo established the Limb Reconstruction Service at the Royal Children’s Hospital and currently hosts an International Fellowship in that field.

Leo has sub-specialist interests in correction of congenital deformities, hip dysplasia, joint replacement, neuromuscular disorders and foot and ankle surgery. In 2006 he was appointed Chief of Surgery (Executive Director Surgical Services) at The Royal Children’s Hospital and was made Clinical Associate Professor University of Melbourne.

Leo, it’s evident that you make a difference to the outcomes of the lives of children. What in particular interested you in paediatric orthopaedics?

I started a career in paediatric orthopaedics because I was fortunate enough to work for some of the great surgeons who showed me that in no other area of orthopaedics could you make such a significant impact on the total development of an individual. I was attracted to the field as I enjoy working with families, thrive on being intellectually challenged every day and wanted to find answers to the myriad of unanswered questions in the highly complex world of limb reconstruction.

Have there been advances in the type of surgeries over the past decade and if so how do they support your patients’ outcomes?

Paediatric Orthopaedics has transformed over the last two decades into a dynamic area of surgery with a clear focus on meaningful patient outcomes. We use some of the most advanced technology in diagnostic imaging, gait analysis, molecular genetics and neurophysiology. Our surgical techniques are continually improving, implants and external devices developing and rehabilitation programs expanding.

What advances in medicine and technology do you anticipate in the next few decades, and how will this impact the amputee community?

Over the next few decades there will be exponential development in surgical implants that react with the body, 3D printing of body parts and the prospect of useful stem cell therapies coming online. This will offer greater options to the amputee community in prosthetic integration, replacement of body parts and the biological manipulation of the limbs in the form of growth and function.

What are your recommendations or suggestions to the new parents you meet? For example those who have either given birth to a child with a congenital limb deficiency or whose child is about to undergo an amputation?

For most parents, for whom a prenatal diagnosis is made, they are concerned about what will their child look like and how will they function. Within a few days of birth the worry usually turns to the ability to walk and play and less about the look of the limb. I always make sure parents understand that their child with a limb deficiency knows no different and will adapt to the problem in the most amazing ways without any instruction. All children with a lower limb deficiency will walk – without exception. Play and desire are very strong motivators. I strongly suggest that they meet with other parents with children with similar problems and at different ages but make sure that they know that every child is different and that the treatment offered may vary. I believe that in the decision making for treatment, be it prosthetic or reconstructive , that we all agree that no matter what we do the utmost to preserve childhood (education, play, sport, social life) as the child only have one shot at it and this is what produces the person that goes on in life.

How can parent’s best prepare their children for an amputation or a reconstructive limb surgery?

Amputation can be discussed with any child of any age and it should be done in a way that is age and maturity appropriate. Children should see other children who are functioning well, the hospital stay described and even a pre-admission with a visit to the ward arranged. They should meet the prosthetic team and be given a chance to voice their opinion. It is always distressing to me when parents do not want amputation discussed with their child before the surgery as this sets up mistrust, fear and usually makes the recovery longer and pain is more of an issue.

From your experience what aspects of support do you think is most beneficial to parents who are dealing with their child’s limb loss or congenital limb deficiency?

Truth with careful explanation and, most importantly, look at the whole child and all that they represent as no one is defined by a missing body part.

Associate Professor Leo T. Donnan, M.B.B.S. (Melb), F.R.A.C.S., FAOrthA

Senior Orthopaedic Surgeon

The Royal Children’s Hospital, Melbourne

 

 

Karl Huttenmeister, Prosthetic Technician

Karl Huttenmeister article4Karl Huttenmeister – a prosthetic technician for 23 years learnt his craft on the job –‘apprenticeship style’. He currently works at Orthopaedic Techniques in Fitzroy, Victoria.

How did you get involved in Prosthetics and Orthotics (P&O)?

It was purely the idea of getting paid to make something amazing that could help change another person’s life; with my own two hands. Another reason was to learn about materials and techniques I hadn’t yet mastered.

What are some of your younger clients’ expectations of their prostheses (age and gender dependent)?

Children expect much more than the adults. They not only require the prosthesis to function and fit perfectly (which is usually the main concern of the parents, and for us) but they also want to ‘fit in’ by ‘standing out’. Removing the stigma has always been a challenge, but I think things are changing for the better. This applies to girls and boys, of all ages.

What are some of the more common concerns for parents, and what is your advice to them?

Parents’ concerns vary. Some are concerned about every detail, from cast to final fit, whilst others are happy to put their faith in us to do the best for their child. Artificial limb breakages and loss of volume resulting in skin breakdowns seem to top the list. Prosthetic limbs are in no way indestructible and some children manage to destroy them within a matter of weeks. Kids will be kids. I’m glad they don’t hold back or let their new limb stop them from enjoying their childhood.

What information do you provide to parents whose children are scared of having a prosthetic cast taken? How can parents best prepare their children to help reduce stress levels?

I have found that getting the cast done as quickly as possible helps, as does ensuring the child is ready; so not too tired or after a long day. Mornings usually are better as the stump is at its best and involving the child in the finishing process helps as well. Something as simple as having children show the clinician which design or pictures they would like helps to engage them in the process; they feel excited about what they can show their friends.

What advances have you noticed in paediatric prosthetics in the last 5 to 10 years?

I have seen so many changes in prosthetics. Ten years is a long time in this industry in relation to innovation and new materials. Liners and socket interface variations have moved forward in leaps and bounds. Components have made quite significant advances; however as far as children’s prosthetics go, the ‘style’ of fittings has remained very similar. That said I am able to construct the sockets with much stronger and lighter materials which means children use far less energy controlling the limb and the added strength gives them more confidence to do all the things their friends do.

What improvements in children’s prosthetics would you like to see in the future?

The biggest improvement would be to have high activity components like knees and feet. It would be great to see children access newer products like aqua legs (a water proof cover that can be slipped on your child’s current prosthesis) or water legs (water proof prostheses) – imagine hearing your child asking “can I play in the water?” and the parent being able to answer “Yes, you can!” with all the confidence in the world.

What’s the best part of your job?

A lot of people ask me this and I have to say, it’s the look on the kid’s faces when they first see their cool new leg.