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 Kody's parents hoping for a miracle 

Kody's parents hoping for a miracle

26/07/2008 4:00:00 AM
In Kody Tobler's Warilla bedroom the toys are gathering dust and the crib has never been slept in.

The quiet, empty room is not an easy sight for parents Kristy and Justin to bear, but they can't complain.

Theirs is a miracle baby.

Kody was born on January 27, five weeks premature, with part of his small intestine outside his body.

Since then, he has been unable to leave Sydney Children's Hospital.

The condition - gastroschisis - limits blood flow to an organ, so it doesn't develop. Kody's large intestine is also very small.

Hours after he was born at Wollongong Hospital he was flown to Randwick, where doctors were forced to remove almost all of his small intestine.

What remained, his parents were told at the time, was not enough for him to survive.

"They cut around as less an amount as they could, but they ended up leaving him with 27cm of small intestine," Mr Tobler said.

"We were told a baby can't live on 27cm. He'd be lucky to last 24 hours, so spend as much time as possible with him. It was hell."

His progress depended on how well he would take to feeding, but Kody took the challenge in his stride.

Almost six months on, he has taken with gusto to a life-saving diet of liquified sugar, fat and protein.

Though he will likely remain reliant on a tube to feed for many years, if not the rest of his life, "Tough Tobler" has thrilled his parents and surprised doctors with his progress.

"I'm over the moon," Mr Tobler said. "We never thought he'd gain so many kilos - he's up to seven kilos."

Kody's gastroenterologist, Associate Professor Andrew Day, said about one in every 6000 babies is born with gastroschisis.

His progress is considered all the more remarkable because he has no ileocecal valve - the valve that should join his small and large intestines.

"If you don't have the valve you usually need 50cm to get full feeding," Prof Day said.

"Generally we had to be cautious with all these things stacking against a little body. We don't know what the future holds ..."

The Toblers hope to establish a foundation in Kody's name to raise awareness of gastro conditions.

And they want him to sleep in his own room - if only for one night - before his first birthday.

"We've got a whole bedroom set up for him but we've never used a thing," Mr Tobler said. "We'd love him to be at home."

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Date: Newest first | Oldest first
Kody is a precious gift, such a happy little soul. He gives you a smile that melts your heart. Lord willing he will be our miracle boy for years to come. I love him very much, Nanma
Posted by Nanma on 26/07/2008 6:18:11 PM
Justin and Kristy are our old neighbours and it's great to see Koby and them doing so well. We couldn't be happier for them all. After a rough start to their life together we are sure they will come through this with flying colours. Always Mick and V
Posted by Mick and V on 27/07/2008 6:13:15 PM
Wow - what a courageous little boy. Your story touched my heart. I have a seven month old son who doesn't weigh much more then Kody, so well done! Keep smiling, and all the best - hope he's in his room by Christmas!
Posted by Jo on 27/07/2008 9:01:06 PM
My daughter was born in 1993 and had all but 27cm of small bowel removed as well she spent 14 months in hospital but she is now great. Stay positive, you will get through this.
Posted by megs on 29/07/2008 12:24:19 PM
Keep fighting Kody, you are yet another miracle gastroschisis baby. Kristy and Justin, if you need to share your experiences, we have like minded parents that have experienced very similar with Gastroschisis babies of our own on the www.gastroschisis.co.uk website.

Dean

Posted by Dean on 11/08/2008 8:51:44 PM
Thank you for Kody's story. I have a granddaughter. She lost all but 7 inches. She is now 16 months old. She is on a transplant list. We just take it one day at a time and enjoy every minute we have. Thank you for Kody's story. Shelia (Chassidy's Nannie)
Posted by Shelia on 25/08/2008 8:17:21 AM
Kody is a gorgeous little boy. He is truly a gift. His a miracle boy and i beleive he will get through this.
Posted by Neighbour on 10/11/2008 12:22:23 PM
Thankyou for all the support.

Kody is still with us and figthing hard.

He is now one year old and kody just started his fund for gastrologly department and you can see it in at www.everydayhero.com.au\kody_tobler_fund and hope to have him in the local paper soon thanks again it means alot

Posted by DAD MUM on 2/02/2009 4:57:59 PM

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Kody Tobler has surprised his parents and doctors with his brave fight for survival since he was born on January 27 with part of his small intestine lying outside his body.  Thrilled: Baby Koby with his mum Kristy and dad Justin at the Sydney Children's Hospital. Picture: ORLANDO CHIODO
Kody Tobler has surprised his parents and doctors with his brave fight for survival since he was born on January 27 with part of his small intestine lying outside his body. Thrilled: Baby Koby with his mum Kristy and dad Justin at the Sydney Children's Hospital. Picture: ORLANDO CHIODO

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