Manager, mother, mourner and her little miracle

By Ivy Jensen

Bonita Koch didn't give a damn for the statistics; she had not let a tough life on the land beat her down, she moved countries in time to be caught in the Millennium Drought, she survived a dairy industry self-imploding. But told Ivy Jensen it all paled to insignificance when her miracle baby Aiden arrived

WHEN BONITA KOCH was told her newborn son Aiden had only months to live, probably four, no more than nine, she knew better.

And she was right.

Not only did she prove the doctors wrong her little Aiden would defy all odds, living until he was just four months shy of his ninth birthday.

A mother's love knows no bounds.

It's this never give up attitude that has seen Bonita tackle any challenges in her life head on.

That fierce determination; against all odds.

Whether it be raising her severely disabled son or running a dairy farm in Tongala through years of drought and plunging milk prices.

There were a lot of things Bonita was told she couldn't do.

She would never be able to bring Aiden home from hospital.

And she definitely couldn't live in the country, let alone run a dairy farm if she was caring for a child with special needs.

The fact Aiden was blind for the last four years of his life, and would never be able to walk or talk, or live to an old age, never stopped Bonita doing what she wanted to.

And most of all that was simply to love her child — all any mother would want.

And she believes it was this love that saw Aiden live as long as he did.

“He was loved by his parents and those who met him, and that was a really significant part of Aiden and who he was able to be,” she said.

Aiden was Bonita and husband Merv's 'miracle boy' after many years of trying.

Both growing up on dairy farms in New Zealand, they married in 1992 and started share farming together on a 300-head dairy farm in Waikato, then moved on to lease a 400-head farm in Northland.

Dairy farm ownership in New Zealand was achieved in 1998, purchasing a 240-cow property, leasing half of the farm.

Their aim was full ownership within five years, but payout was down and things were tight in dairying.

So when a share milking position came up on a 1000-head dairy farm in Deniliquin, they jumped at the chance, moving to Australia in 2001.

“We quite enjoyed farming, the environment and the dryness, until the drought hit in 2002,” she said.

“That was a real eye-opener.”

But rather than giving up, they learnt to adapt.

“The thing we've learnt being here in Australia is that not one season is the same,” Bonita said.

“You've really got to be able to change direction and change focus. And make a new plan and have a few plans up your sleeve.

“You've constantly got to be looking at the weather, looking at the payout and what's happening overseas with milk prices and juggling a few issues, as well as managing what's happening on the farm day to day.

“The drought threw lots of challenges and one thing we did in the first drought was we heard you could purchase straw and put liquid urea on it and that would make it more palatable and digestible for the cows to eat and we were able to continue milking even though hay just disappeared.

“So you've really got to think of innovative ways and be open to what other people are doing and what's working.

“So that was challenging, the things we had to do to get through.”

Within three years, Bonita fell pregnant with Aiden, but by 20 weeks it was discovered his brain wasn't forming properly and doctors recommended an abortion.

“It was life altering. It was pretty much 'plan a funeral',” she said.

But, again, Bonita never gave up hope.

“Because I could feel Aiden moving and there was a precious little life inside of me, I wanted to do the right thing, what's right for me and what's right for my unborn baby,” she said.

Aiden survived birth — arriving on November 12, 2004, which was his first miracle.

But his condition — Walker Warburg Syndrome (WWS) — was so rare Bonita said “no-one has seen it before in Australia or New Zealand”.

WWS is the most severe of a group of genetic conditions known as congenital muscular dystrophies, which cause muscle weakness and wasting (atrophy) beginning very early in life.

Most affected individuals do not survive past age three.

“When he came out, he was very weak but he was breathing by himself and his heart was beating,” Bonita said.

Three days later Aiden underwent a shunt operation to relieve pressure on his brain caused by fluid accumulation.

“The surgery was basically a flip of a coin. It was 50/50 as to whether it would work. But he was going to die if we did nothing,” she said.

“It was pretty hectic and awful. Here's this little boy who you instantly fall in love with and you want to do everything you can and you don't want to do any harm and these are your options.

“So we went with what we thought was the best at the time.”

During surgery Aiden went into shock and almost died, with doctors having to revive him.

From then on — knowing Aiden was living on borrowed time — Bonita knew she had to cherish every moment with her son.

“Part of our philosophy with Aiden was just to live as normal a life as possible and we would do things as a family,” she said.

Once again proving doctors wrong, Bonita and Merv brought their son home when he was two months old.

“The doctors reasoned with themselves that Aiden could go home and said 'take him and love him because he's not going to last very long',” she said.

“They said 'we don't think he'll last four to nine months and he won't make his first birthday', but we put that aside and went home and got on with life.”

And that they did — celebrating not one but eight birthdays.

Which Bonita puts down to one human need.

“We loved him. We were prepared to do what needed to be done to help him in his everyday life. He was on a lot of medication for seizures, eye drops, reflux, all sorts of things,” she said.

The couple began learning everything they needed to know to keep Aiden alive.

They became experts in using medical equipment so they could insert tubes into Aiden's nose and operate a suction machine to rid his airways of mucus.

Being dairy farmers and working with cows came in particularly handy; drawing on their practical experience learnt when having to handle sick animals.

“But it is quite different when it comes to doing some of those similar things to your own child,” Bonita said.

Of course there were challenges along the way — nine surgeries, countless illnesses, losing his sight and a near-death experience.

Six weeks after buying their 700-cow dairy farm in Tongala in 2006, Aiden was rushed to the Royal Children's Hospital and put on life support.

And while they were doing everything in their power to keep Aiden alive, they still had to run their farms in Tongala and New Zealand.

“On a dairy farm the overall end result is having the milk in the vat,” Bonita said.

“So we had a saying if the milk is in the vat we're doing well. We're going to get paid. So sometimes we had to step back and turn a blind eye to what was going on, on the farm.

“We like things at a high level and for everything to be right, but there were certain times when we knew we had to pull back a step.”

Because in the end time with their son was more important.

Knowing it would be quality time over quantity, they enjoyed every minute of it.

Not letting Aiden's limitations restrict them, the family holidayed in New Zealand, took trips to the snow, caravanned around Western Australia and the Northern Territory.

They even swam with dolphins.

And by 2010, Aiden welcomed a baby sister, Amber, who was born healthy despite a one in four chance of having the same condition.

By this stage, Aiden was six and becoming weaker.

“On reflection and looking back on Aiden's life, we liken it to an 88-year-old man because he was eight years and eight months,” Bonita said.

“You start off and you hit your peak and up until he was four or five years old, he was smiling and quite verbal, making noises, and then he gradually grew weaker and weaker.”

Sadly, inevitably, after a bout of pneumonia and respiratory infection, Aiden died on July 18, 2013, at the RCH.

Bonita always knew this day would eventually come, but that did nothing to lessen the shock.

“He passed away on the Thursday and I'll be honest if you'd told me on the Monday he was going to be dead on the Thursday, I just wouldn't have believed you,” Bonita said, finally breaking into tears.

“He had pulled through so many times, so I just thought he would pull through again.

“We turned everything off because he was going downhill and I had a cuddle and took his mask off and he took one breath and passed away very peacefully.”

Amber was a month from her third birthday.

“It's amazing what she does remember. I honestly didn't think she would have much memory but she comes out with things and she's spot on,” Bonita said.

“She wants to remember and she likes to share about Aiden with everyone. We've tried to explain sometimes it's best to keep it for your special friends to give her that validation that she does have a brother even though he's in heaven.

“I tell her how strong he was; that he had a wonderful life despite his limitations, he knew mum and dad loved him, and that's all that really mattered to him.

“He didn't know he was handicapped, which I think is a bit of a blessing and we just made the most out of his life that we could and did what we could for him to make his life happy so he could have an enjoyable life with us.”

And while there is nothing worse than losing a child, Bonita's journey has been bittersweet.

Because being Aiden's mother was a gift.

It has made her into the strong, independent and empowered woman she is today and changed her perspective on life.

“Don't give up, learn all you can,” she said.

“Cherish every opportunity and live life to the fullest. Don't put things off, make things happen and just appreciate it all.”