Rohan is the son of Justin and Lyn McDonald and little brother to eleven year old Neil. Rohan and Neil are very close brothers, supportive of one another’s interests in caring for the many reptiles that also form part of the family, as well as participants in an array of sporting activities.
Rohan is described by Justin as “a very bright, outgoing child who is willing to give anything a go”. Rohan is also showing an early interest in engineering and construction using his Lego collection, and love of maths, to build complex movable buildings.
Neil is showing an early orientation towards zoology, with a specific interest in reptiles and a desire to become a crocodile handler when he is an adult. Neil is not only described as an incredibly supportive big brother, but also as a child who is “older than his age, wise, caring, imaginative, perceptive and insightful”. Neil is a natural carer of animals, spending considerable time in animated conversation with them. Neil is equally just as caring about his brother and peers. Indeed Justin wonders if the future will see Rohan build a crocodile sanctuary in which Neil will be the manager!
Rohan was born with congenital limb differences affecting both legs, one of which was identified pre-natally while the other was not apparent until after his birth, resulting in bi-lateral amputations when he was a toddler. “At the 20 week scan we were told that Rohan had a club foot but, at that stage, other limb differences were not apparent,” Justin said. “However, when Rohan entered the world it was obvious that his left leg was also affected, as he had multiple joint fractures and twisted tendons with this leg turned up and positioned under his bottom,” explained Justin. Upon birth tests were conducted to determine the condition that was affecting Rohan’s left leg. Initially Rohan was mis-diagnosed with Arthrogryposis, a rare condition where a child is born with joint contractures which means that some joints don’t move freely and may be stuck in one position; often resulting in muscles around these joints being thin, weak, stiff or missing. However, this diagnosis was revised some months later in Melbourne.
Shortly after birth, Rohan went through ten months of left leg strapping by a Physiotherapist in Brisbane as well as numerous scans and x-rays to determine his post-birth development. While Rohan was going through considerable assessments and physiotherapy, Justin began on an international search for further information about Rohan’s conditions and possible interventions that would improve his immediate and long-term outcomes. Fortunately Justin was also able to call upon a good friend who is a Cranio Maxillofacial Surgeon in Melbourne, who recommended that he meet with Dr Ian Torode at the Royal Children’s Hospital.
“Meeting Dr Torode was a life changing experience, as he quickly identified that Rohan actually had Tibial Hemimelia and the bones in Rohan’s lower left leg would never develop. Dr Torode recommended a Syme amputation of Rohan’s right foot, a centralization of his right fibula to give him a functioning patella and through-knee amputation of his left leg to provide improved mobility, less pain and ultimately a better life,” Justin explained. After this meeting in Melbourne, Justin and Lyn met with a number of doctors who also discussed amputation or bone lengthening surgeries. “We looked into bone lengthening but were told that given Rohan’s limb differences, surgeries would need to occur over many years and there could be no guarantee of success,” Justin said.
Justin and Lyn met with an Orthopaedic Surgeon in Brisbane who concurred with Dr Torode’s assessment and recommendation to take the path of amputations. “We took about six months before we decided to go ahead with Rohan’s amputations, which included a few surgeries overall, and took place when Rohan was around 20 months of age,” Justin recounted. Naturally, the decision to amputate was a time of worry and concern for Justin and Lyn and something that wasn’t made without considerable questioning of various healthcare professionals and personal researching. “Something that assured us we were making the right decision was a comment made by Rohan’s orthopaedic surgeon in Brisbane. He said to us that he felt honoured to work with Rohan because this is a surgery where he has the chance to improve a child’s life,” Justin revealed.
Justin and Lyn experienced the joy of seeing Rohan walk for the very first time, a month after his surgeries and immediately after he was fitted with his first prostheses. “It’s hard to express in words the emotion, thrill and pleasure we experienced when we saw little Rohan walk for the first time. We knew we had made the right decision,” Justin said. As Rohan adjusted to wearing his “new legs”, Rohan came under the care of Physiotherapist Shail Maharaj, who is now the Lady Cilento Hospital’s Limb Clinic Coordinator. “The amazing rapport built between Shail and Rohan was integral to Rohan’s early development and adjustment, and we can’t thank him enough for being there to support Rohan and the rest of us in such a holistic manner,” Justin emphasised.
Being located on the Sunshine Coast, Rohan now attends regular physiotherapy sessions with Amanda Fairbank from the organisation Montrose Access. “We were so lucky to have moved from outstanding physiotherapy sessions led by Shail to the equally outstanding Amanda. Amanda is an inventive, creative Physiotherapist who listens to our ideas and develops plans, strategies and paperwork that reflect her holistic approach and dedication to Rohan,” Justin explained. Locally, Rohan is supported by Prosthetist Dewet Heyns from Sunshine Orthopaedic Services who, for many years, has been fitting him with new prostheses and recreational devices. “Dewet and the team really understand Rohan and the complexities of his limb differences. Consequently Rohan’s ‘everyday legs’ are adjusted regularly due to his growth, and he has also been fitted with ‘swimming fins’, ‘running legs’ and ‘beach legs’ that have allowed him to participate in activities individually, with peers and with his brother Neil,” Justin outlined.
Rohan experiences some exhaustion at times, and when that occurs he uses a walking frame or walking stick for mobility. However, where possible, Justin encourages Rohan to walk without assistive devices for exercise and to build independence and confidence.
Rohan participates in a wide range of activities. At the moment the local Seahorse Nippers is a regular weekend activity, where Rohan is joined by other nippers to participate in kayaking, water activities and one-on-one support that sees Rohan confidently and safely swim into deep waters. In the past Rohan also attended his local Riding for the Disabled centre, an activity that Justin feels is very beneficial for children and amputees because it “not only teaches children responsibility and commitment to an animal, but is also good for building core strength and improving balance”. Rohan also uses a hand-cycle to ride and is learning the cello this year.
Rohan attended the 2015 Össur Mobility Clinic in Brisbane, developing skills and confidence that have contributed to improvement in his overall mobility and confidence. “The Mobility Clinic allowed us to meet some amazing adult amputees, parents, children with limb differences and allied health practitioners that we could really connect with,” Justin shared. Rohan and Justin are pleased that even more amputees and children with limb difference to will be able to partake in the Sydney Össur Mobility Clinic this year.
One of Rohan’s most remarkable life experiences was being invited to a local meeting of Mates 4 Mates; an organisation that supports current and ex-serving Australian Defence Force members (and their families) who have physical or psychological wounds, injuries or illnesses as a result of their service. Rohan was invited as an ‘honorary ambassador’ to meet group members. Rohan started chatting with group members, showed off his prostheses and asked to try on prosthetic legs being worn by muscular and much taller members. Justin recalled that “one ex-serviceman, who was struggling with adapting to life as an amputee, spoke to me afterwards and told me that meeting Rohan significantly helped him to move forward emotionally. This man saw confidence in Rohan that made him think that he could process what he had been through and accept life as an amputee. I was honoured that Rohan’s attitude made a difference in the life of this man who gave of himself to our country”.
When asked about his limb differences by adults and other children, Rohan explains it in a simple, accurate and forthright manner – “The doctor cut off my leg and foot because I didn’t have all my bones, and now I have new legs”. Justin has worked with Rohan to ensure that he feels confident responding to questions, and if further information is required he is there to step in and provide more details. “I appreciate honesty and am pleased when people ask questions, as it is an opportunity to explain Rohan’s limb differences and reduce stigma in the community. Many people have never met an amputee or a child like Rohan, so their questions and desire to learn more is something I really appreciate. In the same way, if people are narrow-minded or make inappropriate statements about Rohan we are quick to inform these people because you never know if it is just a lack of knowledge or that something negative, completely unrelated to Rohan, is going wrong in that person’s life,” Justin emphasised.
Justin, who has worked professionally in the disability sector for over 20 years, is a firm believer in self-advocacy and encourages other parents to “never be afraid to ask questions, seek different professional opinions and speak to others”. Justin feels that this approach applies to support for any children, but is particularly important when it comes to achieving the best outcomes for children with limb differences. Justin also feels that the Limbs 4 Kids Facebook Group is a great way of meeting other families and gaining insight and new strategies from other parents. “I like being able to share my experience and knowledge with other parents, while at other times I use it to gather practical tips and strategies posted by other parents – it’s a two-directional relationship that you can tap into any time of the day or night,” Justin said.
Justin hopes that ‘meeting’ Rohan via this article will assist other parents already on or just entering the world of childhood limb difference will assist them. He also wanted readers to know that Rohan and Neil would “like to say hello” to everyone out there.
Limbs 4 Life thanks Justin for taking the time to be interviewed and allowing Rohan and his family’s story to be profiled. We wish Rohan and Neil all the best with their many activities, and look forward to hearing more about their budding interests in construction and reptile care over the coming years!