Little Seb kicking mighty goals

Seb can best be described as an "old man, in a little man’s body". Seb is full of questions, expresses concerns for others and communicates personal worries that are generally apparent in older children or emerge later in life. But, at the same time, Seb behaves just like any other adventurous and friendly seven-year old boy does. He is a beautiful, inquisitive, caring and increasingly independent little amputee.

Mel and Jai are Seb’s hard working, caring and community-minded parents. Tay is Seb’s older sister, a passionate registered nurse, and they share an affectionate deep sibling bond. Seb also has extended family across Australia who love and adore him. Mel also pointed out “it really takes a village to raise a child” and that diverse social network also plays a key role in the life of Seb and their family too.

Seb entered into the world in very challenging way at the Mercy Hospital 2014. Seb was growing inside Mel alongside his twin brother Zac. However, at 18 weeks into her pregnancy Mel was rushed into hospital due to complications related to the very rare ‘twin-to-twin transfusion syndrome’ (TTTS) and again at 20 weeks after her waters had broken. Sadly, after TTTS complications, Mel and Jai lost their much-wanted baby Zac at 23 weeks. Mel then remained in hospital and, alongside baby Zac, their beautiful son Seb was born prematurely by caesarean at 27 weeks weighing just 890gm.

“I was quite sedated during the caesarean, but once Seb was born I could hear the team say ‘there is something wrong with his leg’,” Mel explained. So, Mel and Jai had only the briefest of moments to kiss Seb before he was rushed to the ICU after which they tried to “absorb the shock, fear and concern” that followed his birth.

A doctor explained to Mel and Jai that they moved Seb to ICU to provide him with all the supports that a premature baby needs. “The doctor said there was something wrong with his leg and, although early to confirm how, it was a catastrophic injury that was necrotic - in other words his leg was dying,” Mel recalled. The doctor advised that other paediatric specialists were best placed to determine this and investigate if there were any other internal issues affecting tiny Seb. So the best course of action was to safely transfer Seb to the Royal Children’s Hospital.

Jai and Mel were frightened and distressed. But they agreed with the medical team and knew that Seb needed to be transferred to the Royal Children’s Hospital immediately, even though it meant Mel would be separated from him. “I told Jai to go with Seb and that I would come as soon as possible,” Mel recounted.

While Mel was getting regular updates from Jai and the doctors, she felt enormous relief when she was finally discharged and could actually see and touch Seb every day. It was quickly determined his leg was necrotic and constant infections from the injury site were threatening his life, so he had a high amputation of his left leg a few weeks after birth to prevent that from happening. Seb endured countless surgeries, lumbar punctures, infusions during his recovery. He also had heart surgery and two hernia operations before he was discharged home. “Seb went through so much, but he was a real warrior and despite all of it he left hospital and came home 88 days later – amazingly on his official due date,” Mel marvelled.

For Mel, bringing Seb home was the greatest gift of all. It meant that she could finally start to bond with him. Seb managed to meet all of his milestones despite being so much smaller than his peers. He received his first prosthesis at the age of one, and with lots of support and practice he was unstoppable in weeks. His first “leggy” was made at the Royal Children’s Hospital. The team had never cared for a patient as small as Seb nor had they made a prosthesis for a child with such a high amputation. It was a constant challenge - changing many times to suit Seb’s desire to be consistently active.

By the time Seb started 3-year-old Kindergarten he’d already outgrown multiple legs. At Kinder Seb and his friends played on the climbing equipment, ran around, dug in the sandpit and climbed the cubby house ladder. On days where Seb didn’t want wear his “leggy”, he would get around on a little trike. As he grew, the small trike was replaced with a larger trike until he was big enough to use a wheelchair. Seb continually rose to every challenge which Mel believes was “purely because he is a determined little human supported by a wonderful family and great community”.

Seb is now in Grade 2. Although 2022 has been a little more challenging because Seb is finding that children, whether at school or out in the community, are asking even more questions about his limb than in previous years. Although Seb is not afraid to respond to questions, it’s the frequency of the questions and the more extended looks that are causing him some concerns. Mel wonders if this is because of the impact of COVID-19 lockdowns and resulting lack of regular visualisation of Seb’s prosthesis, or if children are generally becoming more confident to ask questions. “We’ve spent a lot of time discussing various situations with Seb and helped him to take ownership of his preferred responses. I also make sure that Seb knows that he doesn’t have to share his story either. Provided he is polite, it’s okay for him to just say he would rather not talk about it,” Mel explained.

Seb prefers to say “The doctors had to take my leg off or I would get very sick and die”, “I get to wear a different leg but can still do things you do” and/or “I have a little leg”. He’s also comfortable with younger children saying that he has a ‘robot leg’, as he knows that’s something which makes sense to them. So, Mel is glad and proud that Seb knows discussing his amputation and prosthesis is something which requires terms or language that needs to be age appropriate. Again, this demonstrates a degree of empathy, understanding and maturity at a level higher than his actual age.

In the same way that others are asking Seb questions about his limb loss, he too is directing new ones to his own parents. More recently he asked his Mum “does it feel different to sleep when you have two legs than it does to have one?”. As a seven-year-old this is quite an advanced, yet very natural, enquiry. Mel, and the family, believes that openness and transparency when talking is paramount. So, when asked this very question Mel honestly said “I don’t know any different as I’ve only ever had two legs, so I don’t really know what it’s like to only have one leg sweetheart”. Seb then ruminated on this, and realised if the question was re-directed he could only respond in a similar manner, for he only knows what it’s like to live life with only one leg with no knowledge of the alternative.

Seb generally wears his prosthesis most of the day, each day. But he is sometimes tired and chooses to use a wheelchair. Seb’s favourite activities and sports are riding his scooter, playing footy, swimming (which he began at 6 months old), playing cricket, playing drums and drawing. More recently he’s tried out some indoor rock climbing - something he does without wearing his prosthesis. “He absolutely loves climbing and adores looking down and waving at me. He’d love me to join him but I’m terrified of heights,” Mel laughed.

In recent years Seb started going to Bounce, an indoor trampoline park, where he jumps without wearing his leg. It all started after he was invited to a children’s birthday party. Kindly, the parents of the child whose birthday it was checked whether it would be suitable for Seb. This encouraged Mel and Jai to take Seb to the venue prior to the party to test suitability and check for potential risks. It’s now an approach they take when Seb requests to do something new or he’s invited to a party that will involve activities he hasn’t participated in before. “We can’t be unrealistic, but we also don’t want to discourage Seb from being adventurous, so we test things out, try and find solutions to possible challenges and take every opportunity to educate staff if they’re unfamiliar supporting children with a limb difference,” Mel explained.

Seb’s sister Tay has played a pivotal role in his life and, in equal measure, he’s enriched her life. Tay was 15 when Seb was born, so she felt a great many fears and worries following his birth. She was thrilled to have a new brother but, like Seb’s parents, grieved for Zac and constantly worried whether Seb would survive. She was concerned about what Seb’s future held. But over the years of growing up together they developed a sibling bond full of creativity, physical activity, babysitting and love. After seeing her brother spend considerable time in the healthcare system, Tay decided in her final years of secondary schooling that she would like to pursue a career in that very industry so that she could help others.

So, Tay completed University studies and now works as a nurse in the neurology department in Victoria’s largest public hospital. “I am so proud of what Tay has achieved personally and professionally, and we are thrilled to tell everyone that our daughter is a nurse serving the community,” Mel beamed. And Tay is honoured when she has the chance to care for hospital patients who are amputees and build rapport by letting them know that she has a brother who is also an amputee. It often leads to many questions and is yet another way of paying forward the kindness that the whole family have felt since Seb arrived.

Others, such as organisations and role models have been part of Seb and the family’s ‘village’. Mel has drawn particular strength from the Limbs 4 Kids community over the years, building friendships and networks with fellow parents. Seb has been mentored by Liam Twomey, a START Foundation Ambassador and Para-Athlete and Mike Rolls, an amputee golf mentor.

Increasingly, Mel sees the adult amputee community approach Seb directly, something that makes her happy about his future life. “We were recently at St Kilda Music Festival when an older amputee came up to Seb and said ‘hello mate, you’re part of my community too’, and they then engaged in a chat about both being amputees,” Mel shared. It’s so important for Seb to realise he is not alone in his challenges and triumphs.

Mel, Jai and Tay have developed an array of skills and tips since Seb came into their life. Some have been formal ones offered by professionals, whereas others have been those shared by families. Even more have been skills the family have developed personally. Mel wanted to share just some of the tips and learnings important to their family and might assist others just starting on the limb difference journey:

• While your child may be different, try to remember that all children are different – whether that’s distinct identity, personality, ability, or interests. Your child is not defined by their difference.
• The saying ‘where there’s a will there’s a way’ is valuable, as until a child tries something they can never be doubted. If it doesn’t work the first time, don’t be afraid to step outside the box and be creative to help your child get it done.
• When you think something might be difficult or challenging, be creative and imagine yourself in your child’s situation to try and find an innovative safe solution.
• Learn to plan ahead, because children who use a wheelchair or wear prosthetics do need some pre-planning in relation to items they need prior to going out or travelling (e.g. pack enough liners, spare parts, medical supplies).

Mel is passionate about making the world an inclusive one where anyone, regardless of age, identity, health condition or difference are accepted and can access their community without difficulty or stigma. “My hope is that everyone works together, connects and realises that while we might differ, we should all want to live in a world where people are treated fairly, equally and able to get the support they need.”