Without Telethon, the diaries of Madi Dobels would likely be more an obituary than a powerful tale of a mother’s hope.
She wrote them in hospital over several weeks while the life of the child she carried inside her hung in the balance.
Born a tiny 726g and gravely frail after an emergency caesarian at just 26 weeks, Madi’s three-year-old son Koa now exhibits a robust cheekiness that belies his extraordinary early battle to live.
But having to be attached almost constantly to an oxygen tank and be fed only via a tube because he cannot swallow, are unavoidable reminders of not only what he and his mother have already been through, but what they still need to respect.
“Everything is still very scary because he can be so happy and the next minute he could be taken by priority one ambulance,” said Madi, whose gripping story was the fundraising centrepiece at Saturday night’s Telethon Ball.
“Sometimes he is so unwell you would do anything just to see a smile, but when you see him belly laugh it’s all worth it. Everything that could have gone wrong has gone wrong — if he stayed in any longer, he wouldn’t be here and if he came out any earlier he wouldn’t be here either.
“Someone has been looking over him.”
![Madi in hospital with Koa.](https://images.thewest.com.au/publication/C-8580848/d0b96941c9bd13088cf995130d3333229e6d2d97.jpg?imwidth=810&impolicy=wan_v3)
Madi had enjoyed a perfect pregnancy with Koa and planned for a home birth until her waters broke suddenly at just 21 weeks.
She was told by doctors it would take a miracle for him to survive. Even if he did, he would face a range of complex medical conditions. It was an excruciating reality to ponder as she lay still on her back in a hospital bed for nearly six weeks.
Madi was also warned if she went into labour before 24 weeks, there would be no attempts to resuscitate Koa, who was in breach position at birth and had his umbilical cord wrapped around his neck. She would be allowed to hold and cuddle him until he stopped breathing naturally.
The fact she was a midwife and acutely understood the ramifications added extra, unwanted tension.
It was during that time she wrote seven diary volumes after her mother Tunya had supplied her with a journal and a pen. Her first entry was the lyrics from You Are My Sunshine, a song she sang to Koa in the womb and through the incubator door as he fought for life in his first five months at King Edward Memorial Hospital.
![Madi said the Telethon community had become like a family for her.](https://images.thewest.com.au/publication/C-8580848/c9f1063aeeab8a7ad794f5fe2fea5e447da90b80.jpg?imwidth=810&impolicy=wan_v3)
She has not been able to bring herself to read the diaries again since, but needs little reminder as to the depths of the ordeal for her young family. She also hopes to one day publish them in a book she believes would be perfect for a hospital parent lounge.
“I just wanted one bit of hope, but everybody just kept apologising ... it was a really lonely and scary time,” Madi said candidly.
“I was so angry that they weren’t even going to try. That was just cruel to me. How can you just let a baby not live? I just wanted to know that he was going to survive and I would manage the rest.
“I was writing in the journals just to get it all out of me and it felt like I was talking to him. I never really thought he’d get to read them, but I hoped he’d be able to look back one day and realise how amazing and strong he is.”
One excerpt from the diaries reads: “Please stay strong. Keep fighting this massive battle ahead of you. I promise, I will be fighting alongside of you every step of the way. I will try not to show weakness in front of you. I will cry when you’re not watching.”
What doctors did not factor in were Madi’s tenacity and refusal to give up on the son she felt she had failed, as well as the fight in little Koa, which means “Warrior” in Hawaiian.
![Koa fights for life in hospital.](https://images.thewest.com.au/publication/C-8580848/904dd1657e040cfe49a106b67c18df31bea4078e.jpg?imwidth=810&impolicy=wan_v3)
He had suffered a lung collapse, pulmonary haemorrhage and an extremely rare eye disease that was supposed to take his sight. Significant brain damage was expected to leave him without the ability to walk or talk.
Even showering or swimming poses dangerous challenges if fluids get into his lungs. But feisty little Koa runs around his house like a boss, talking up a storm.
“I remember being in the parent lounge in the neonatal intensive care unit with a lot of other mums I met and we used to wish we would get to the day where we would have to put our kids in the naughty corner,” she laughed.
“I still talk to them now and I think we wished too hard. The kids are all like they were in the NICU, so determined to live and determined to do what they want.
“I can’t describe what it’s like thinking your son is about to die in front of you. But we’ll get there and we’re actually already there to a certain extent.”
A visit to Madi’s suburban home reveals the remarkable job she is doing with Koa and his four-year-old brother Kai, who has been diagnosed with PTSD as a result of his little sibling’s battle. Kai also lives with autism and the pair regularly spend valuable time with their father Lance Timu.
![Madi speaks at Saturday’s Telethon Ball.](https://images.thewest.com.au/publication/C-8580848/db6da0d594ed296b8e2ea1276a39aebf70d00bde.jpg?imwidth=810&impolicy=wan_v3)
Madi is optimistic Koa’s lung tissue will keep developing to the point where he can lead a more normal life without oxygen assistance. But there are few precedents to lean on for hope because few in his position have ever survived.
It is of little surprise she has since found midwifery difficult on her return to work. Working with even healthy babies had “warped” her sense of reality and she too was diagnosed with PTSD, requiring time with a psychiatrist.
“I had the feeling of my waters breaking multiple times a day and it was really real to me,” she said.
“I felt my pants were wet, but it wasn’t happening and the nurse was telling me I wasn’t pregnant. I knew it wasn’t real, but, honestly, I felt crazy.”
But from the time in hospital when she accepted a ProtecT trial drug for Koa when all looked lost, to using services such as Rocky Bay, Kalparrin, Clown Doctors, Starlight Children’s Foundation, Perth Children’s Hospital, HeartKids, Tiny Sparks WA, Helping Little Hands, Horsepower and Hannah’s House, she had been given a greater understanding of where Telethon funds go and just how important they are.
“I used to watch Telethon every year because the way the whole of WA came together amazed me,” she said.
“I never really knew where the money was going after it was donated. But it’s just as simple as getting to the hospital and you’d forgotten to eat or drink and someone would come up with a coffee, or when we came home for Christmas after close to 200 days in hospital and the tree was filled with presents.
“They’ve all become like a whole new family to me and if it wasn’t for the generosity of WA, I wouldn’t have been able to survive the past three years. Thanks to Telethon, we have a new circle of friends and an extended group of angels who help keep Koa alive and support me.”
Madi is also in the process of starting a foundation of her own, to be known as “The Lung Warrior”, aimed at helping children like Koa who sometimes fall through the funding system.