Comradery and the changed lives of carers

Around Australia, there are more than 2.65 million people who are carers, each with unique circumstances and stories of their own. Heather, Jamie and Jakob are three of these people - all helping to care for a child with complex needs.

There are millions of reasons to care. And these are the reasons they do. 

October 16 - 22 marks National Carers Week, a time to recognise and celebrate the incredible role carers play in the lives of all Australians and to raise awareness about the importance of what they do.

Heather and Arianna's story

The last visit to the radiologist for her baby’s sonogram should have been a time filled with joy and excitement. Instead, for Heather, it was filled with fear.

During the routine visit, radiologists discovered Heather’s unborn daughter, Arianna, had enlarged ventricles in her brain – a sign that something wasn’t quite right.

While doctors couldn’t be sure what was causing the problem, they knew Arianna would likely need extra support as soon as she was born.

Within hours of her birth, Arianna had been seen by her local paediatrician and a few days later was transferred to Sydney Children’s Hospital, Randwick (SCH) for specialist care.

For Arianna, the next 12 weeks were spent in the Children’s Intensive Care Unit (CICU), marking the start of her family’s journey with a child living with a rare disease.

“There was a rollercoaster of emotions trying to figure out what was wrong with my daughter. It’s not something you plan for as a parent, having a child with additional needs and how those will affect her at the time and in the future,” Heather said.

“She had low muscle tone, and had problems feeding, sucking and swallowing. At one point she was vomiting with every feed, so she was pump fed. Arianna was very medically complex in the early years.”

Arianna was diagnosed at 20-months old with Sotos Syndrome, a rare genetic condition that occurs in about one in 14,000 births. It is characterised by excessive growth during the first few years of life, with the condition often accompanied by mild cognitive impairment, low muscle tone, developmental delays, and low blood sugar.

Arianna needed a feeding tube and was nonverbal until she was two years old. By the time she was two-and-a-half however, with the help of early intervention she had come a long way and was walking and speaking in three-word sentences.

On top of all that, Arianna was also diagnosed with infantile scoliosis and needed to wear a brace at night for two years.

With so many complex needs, Heather’s world changed and she became Arianna’s full-time carer.

“It was a really hard time, full of worry and anxiety. It still is to some extent, I think I’ll always carry more worries for her. That’s just our reality,” Heather said.

“I had to change my career completely, I couldn’t go back to my 60-hours a week job. My life became completely focused on Arianna, her needs, how her diagnosis affects her and on early intervention."

Heather’s life revolved around taking Arianna to therapy, supporting her at home, researching, learning about regulation and neurodiversity, managing funds, advocating, and connecting with other families.

Fortunately, as Arianna grew, the side effects of her condition began to ease, many of her symptoms resolved and developmental delays have mostly caught up.  

Then this year, she hit her next milestone, starting big school!

For any parent, the moment their child starts Kindergarten is bitter sweet, exciting and challenging all at the same time – but Heather felt this more than most.

“It’s been hard for me to let go after being so involved in her care and trying to teach myself to not worry so much. I can’t imagine a day though where I’ll wake up and not be worried about her,” Heather said.

“In saying that, we never knew quite what to expect with school, so to see her kicking these goals every day, doing really well in the classroom, alongside her peers and loving every minute of it, is really pretty amazing.

“She was a complex child, but you wouldn’t imagine that today.”

Since Arianna started school, Heather has been able to return to full-time work. She says despite what was a tough few years, most days, she wouldn’t change a thing.

"One of the greatest jobs I have ever had is being Arianna’s carer and even though there were some scary hard times, I am grateful for the perspective it has brought me and for the progress she has made," Heather said.

“Arianna is a quirky, happy child, with a great sense of humour. She keeps the household laughing and has developed a passion for drawing and crafts, she surprises us all the time.”

Jaime, Jakob and Helena's story

When Jaime and Jakob take their seven-year-old daughter, Helena, to the beach, she needs to be carried across the sand to the ocean’s edge.

There’s no catching waves, building sandcastles, or making mermaids. They sit together and as the tide comes in, Helena splashes her feet in the water with a smile.

It’s these little moments that shed an insight into Jaime and Jakob’s approach to caring for a child with additional needs.

“The focus is on what Helena can do, what she wants to do, and enabling her to do that. We’re working on ability and independent life skills to prepare her for such a journey,” Jaime said.

“We have been so dedicated to the life, the independence, and the quality of life of Helena. She is my life’s proudest achievement.”

Helena was born with diastrophic dysplasia, a rare genetic condition that affects the development of bone and cartilage. The Children’s Hospital at Westmead (CHW), has become almost like a second home for her family.

The early years of Helena’s life were centred on sustaining and rebuilding her airway, with Jaime and Jakob learning how to operate a CPAP monitor and insert a nasogastric tube for when she came home from hospital.

There have also been extensive stays at CHW to treat Helena’s spinal scoliosis. She has spent more than six months in a halo traction on two occasions to help straighten her spine and in a few weeks, she’ll do another month-long stint before having a spinal fusion.

Through it all, Jaime and Jakob have been a team as carers - always working together to support Helena and her needs.

“Caring for Helena has changed our lives. It has meant shifting our priorities, focusing on what she needs and what we can do to help her,” Jakob said.

“Being a carer means putting her first – it’s making sure whatever I do is supportive of her, or brings her joy and makes her smile, or that the decisions we’ve made are going to impact her in a good way.

“In addition to research, taking her to hospital visits and caring for her at home, it’s also the little moments that count. Helena was all for having light-up wheels on her wheelchair, so it’s the little things like that.”

Jakob changed his career to focus on being a carer for Helena, shifting from being a full-time chef to doing part-time work.

Jaime, meanwhile, started nursing studies to help understand and have better informed discussions with Helena’s clinical teams about her treatment. She has since completed Certificate III, Certificate IV, and a Diploma in Nursing – and now works with patients who live with disabilities.

“Having Helena and fulfilling what she needs from me has given me the drive and strength to become a nurse and work in disability, and be really good at it,” Jaime said.

“To set that role model status for her and show her the people that I work with, has also helped her understand her treatment and the journey ahead.

“Helena meets people of all different abilities and understands what they’re going through. Sometimes she is able to draw inspiration from them with upcoming procedures and challenges, because she’s seen them have it and come through the other side.”

Helena attends a mainstream school and is becoming more independent. She likes to help cut up vegetables for dinner, assists her parents in getting herself dressed, and is working on brushing her teeth by herself.

Jakob describes his daughter as the ‘light of the room’ and that no matter where they go, she always makes friends – especially in the hospital wards. This has been especially important for Jaime and Jakob in connecting with our parents like them.

“We have made some lifelong friends, some who we met in our first admission. It’s good to be able to relate to each other,’ Jakob said.

“Being a carer is a huge responsibility and no one understands it like a hospital parent, but it is also the best job in the world.”

Jaime added the comradery between carers is like family who lean on each other, especially in those moments when they’re facing the unknown.

“We’ve met the most amazing people and been so supported, both in and out of our hospital stays. The strong relationships we’ve made with other carers have been in a similar journey to us,” Jamie said,

“Some have become our closest and most relied on friends because they understand what you’re going through. You don’t even have to say it, you just exchange looks in the corridors and you both know you’re in this together. There’s such comradery.”