Two precious boys came into the world together. But one only has months to live. 

When Brisbane mother, Rachel Irvin, gave birth she was told one of her newborn sons would not make it home from hospital.

“Never as first time parents did we think we would be blessed with two beautiful angels but also that we would only have a limited time with one of them,” Rachel posted on GoFundMe.

At just 30 weeks Rachel gave birth to MoMo twins, Chet and Kohan, in May 2015 – but one of the boys was born with a severe heart condition and his stomach had formed on the wrong side.

At only four days old, Kohan had malrotation surgery then at two-weeks-old he underwent obstructed bowel surgery.

His parents were called four times during the night to be told he might not make it.

“We didn’t know if he would survive past day one which I tried my best to prepare for, but Ko continued to fight through every single day and every time he got really really sick,”  his mother Rachel told Mamamia.

The premature baby kept hanging on. He’s since faced major stomach surgery and three open heart surgeries.

Kohan is a fighter. Image supplied.

Kohan, now 22 months old, has spent most of his short life in hospital but his health has continued to deteriorate.

"The veins from his lungs to his heart narrow to the point that no blood can flow through, that’s been getting worse since he was born. The last scans they did they found they were like little threads now and there’s not much blood flow getting through," his mother told Mamamia.


This month, Rachel was told by doctors that her son has only six to 12 months left to live.

"I remember hearing these words and then everything after that is a blur," Rachel said on Facebook.

"I couldn't hear.. I couldn't see.. and I ran out of the meeting as quickly as I could. I could feel my soul crumbling! I wanted to scream! Hell I still want to scream! I can't remember any day since Monday... I honestly feel as though my world is falling apart.

"I don't want to accept that I'm going to lose a soul that has given me so much, that has taught me so much! I'm going to show Ko everything I possibly can in the time I have left...Every second is going to count until my seconds run out."

A precious moment. Image supplied.

After spending another month in hospital, Kohan is finally home with his mother and she is determined to make every day special.

"Most of his life he has been in hospital that’s why it’s important to me to have him at home as much as possible because he’s so happy at home," she said.

"He becomes a completely different baby, [in hospital] he’s scared, he hates being touched. He’s scared everyone is going to hurt him. It’s heartbreaking to watch," she said.

Brothers. Image supplied.

Despite admitting she is not coping emotionally, Rachel is incredibly brave.

"It is really important to me that Ko doesn’t see me cry, that he only see’s my strength because I need him to be strong. I just be strong for him and Chet every single day and keep going," she said.

Since leaving hospital last Friday the family has been enjoying their time together.

"On Monday both boys patted the dolphins at Sea World. It was an amazing day. We saw a seal show, the polar bears, the penguins and everything," Rachel told Mamamia.

Kohan at Sea World. Image supplied.

 "We had a fantastic day – the boys were in a great mood. It was a very memorable day."

Rachel is organising "more memory making" and wants to plan a trip to Movie World.

"While Ko was in hospital last year for nine months, he loved being in his little bubble watching his favourite movies on a portable DVD player. I think it’d be really special if he got to see his favourite characters in real life," she said.

The boys out and about. Image supplied.

Rachel dreams of watching her son play in the backyard but he has never walked or sat unaided.

Her son's story has seen a large following on social media, and Rachel hopes other mothers will "take every second in" with their children after hearing her story.

"Each day I get I’m lucky. To have nearly two years with him I’m extremely lucky. He’s taught me a lot so I need to always remember that."

To donate visit GoFundMe.

To help support the family and their medical costs, you can donate here.

Tags: babies , baby-2 , gofundme , health , kohan-and-chet
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