kids

Ella lost her son Hunter at 12. But she knows she gave him the 'best life'.

Ella and Jarrod Stratton lost their son Hunter almost five years ago when he was aged just 12, but they’re determined their little man will leave a big legacy.

From the age of about 10, Hunter had been in paediatric palliative care – care for kids with life-limiting or terminal illnesses – and according to Ella, it ‘saved’ them all; which is why she wants more families to understand what it is.

“Palliative care is not about the last day, or week, or month. It’s about giving everyone – the patient and the family – the best life possible.”

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“Hunter had the best smile.” Image: supplied.

The couple, originally from Adelaide, had been living in Christchurch, New Zealand, for more than two years when Hunter was born.

“I had a normal delivery, everything was going well, Hunter was healthy and I loved being a mum,” Ella says.

“I couldn’t wait to show him off to everyone back in Adelaide.”

Ella would have that chance sooner than she anticipated, and under circumstances she never could have dreamt of, as Hunter experienced his first seizure when he was only eight weeks old.

“It was terrifying, I didn’t know what was happening. And I had no idea that was just the start of it.

“Soon after, a neurologist diagnosed mild seizures and benign infantile epilepsy. We were told he would grow out of it by the age of two, and it would be controlled by medication.”

But the medication wasn’t as effective as hoped. As tests continued, Ella discovered that every time she fed her baby, he would have a seizure.

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“Nothing was stopping them. He was on loads of medication, but it wasn’t working.”

Desperately needing support and to be in familiar surroundings, the family returned to Adelaide on a MediVac flight, and were taken immediately to the Women’s and Children’s Hospital.

Hunter remained there for six months, having up to 100 seizures at day.

“But they couldn’t find what was wrong,” Ella says.

“He was on permanent oxygen, being fed by a naso-gastric tube. We eventually had to accept that was our new normal for the time being.

“So, when Hunter was seven months old, we decided to take him home.”

It would be the start of a decade of round-the-clock at-home care, regular emergency hospital visits, tests and doctors’ appointments, which Ella dedicated herself completely to.

“It was so scary because you get accustomed to having medical staff around you in hospital, but Jarrod and I had to learn everything.

“We had to learn to place a naso-gastric tube, for example. Think about his medications, monitor his pain.

“Hunter was in a wheelchair because he couldn’t walk. He also had many food intolerances and allergies that triggered seizures, so that added to the stress.”

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The doctors could never formally diagnose Hunter; in fact, Hunter was only one in 13 children in the world who presented with this group of symptoms, which meant that doctors from all over the world were interested in him.

No one could help; but that didn’t stop Hunter from developing in other ways.

“We saw Hunter’s eyes get a sparkle, and he started using the muscles in his face again, so he was smiling and using eye contact.

“It was so exciting.”

Although Hunter remained non-verbal, Ella describes how he was able to communicate with his family.

“He understood everything. We taught him to bang his hands for yes and no,” she proudly recalls.

Ella also explains that Hunter became the adored older brother of Oakley and Tex (now 11, and 13) and that it gave her immense pleasure to see her boys together.

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Hunter and his brothers. Image: Supplied.

“When he was a baby, we were told Hunter wouldn’t get past one,” Ella says.

“I didn’t believe the doctors. We all had 12 wonderful years with Hunter. Yes, there were many ups and downs, but we adjusted as a family.

“We went on holidays together, and have so many incredible memories.”

Which is why it was a shock to Ella when Hunter’s main doctor kept encouraging her to sign a Do Not Resuscitate form.

“He told us, ‘you have to think about letting him go’.

“I couldn’t face it. I refused to sign the document.

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“I just didn’t understand, because the way they handled it – it wasn’t explained properly to me.

“That was the only way we were told Hunter’s conditions would ultimately cause the end of his life.”

Hunter defied the odds and all expectations – until the eve of his 10th birthday, when Ella knew the situation had changed.

“They think his body couldn’t handle the hormonal changes that came with being pre-pubescent,” she explains.

“He began cyclical vomiting. It became harder to get food into him.”

Ella explains that turning point as the hardest time they had experienced thus far.

“I knew I was losing the battle and I couldn’t make any more decisions. I didn’t know what to do, I needed help.

“So I reached out to paediatric palliative care through the Women’s and Children’s Hospital at the suggestion of another family.

“I wish I had done it sooner, but no one had really explained it properly to me – that it could be an incredible support.

“It changed so much for me; I finally had someone professional and experienced to help guide me through the emotional load. They had seen it all.

“A weight had been lifted from my shoulders.”

Ella adds that over the course of three years, palliative care was able to provide practical support for Hunter’s treatment, assisting with administration and his at-home care.

And she wants other families to know that help is there for the journey, not just for the end.

“People think palliative care is about death; but it’s about making the most of the life that can be lived, for everyone.

“We have to start that conversation. The more we all talk about it, the better support we can all be for each other.”

Having worked intimately with the family for three years to help give Hunter and his family the best life, the trusted and trained medical professionals of the palliative care team were also the ones who were able to tell Ella when they thought Hunter was unable to go on.

“The last five days of Hunter’s life – he was so weak,” Ella recalls.

“Vomiting all the time with any amount of liquid. He was wearing morphine patches, and in so much pain.

“His body was shutting down. Palliative care helped me identify that his body was shutting down…and that his body couldn’t handle any sort of nutrition I was giving him. He couldn’t process anything.

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“As a mother, to be given that news…when your job is to care for your child…it was heartbreaking.

“The team was amazing. They helped with pain medication to keep Hunter comfortable.

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“The team was amazing. They helped with pain medication to keep Hunter comfortable." Image: Supplied.

“We just nested with him for five days, so he was able to be at home.

“It was the best way to say goodbye. You hear of other people having emergency runs to the hospital – but this process gave us a little control in an uncontrollable situation.”

Hunter’s brothers were just eight and five at the time, and being at home helped them understand what was happening, too.

“We got to say goodbye in a beautiful way, if that makes sense.

“I’m so grateful to the team for that.”

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Ella and Jarrod are now helping support the WCH Foundation’s Beach House Project, which offers a holiday home to paediatric palliative care families, by contributing funds to the ongoing running costs.

“Time together as a family was so important to us, we leapt at the chance to be able to help in offering that escape to others,” Ella says.

“We created the HAS (Hunter Alfred Stratton) Foundation to help raise money for the hospital’s beach house.”

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This little man is leaving a big legacy. Image: Supplied.

The HAS Foundation, which was launched this year, is in the process of committing to a certain annual contribution to the WCH Foundation, and other palliative care projects.

“We want to help with fundraising, but also, get the message out there for families experiencing what we have that they’re not alone, and help is out there.”

For more information on The HAS Foundation, visit their website

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