Littlest warrior

By Mara Pattison-Sowden
KATIE Cornish can count the number of times her “little warrior” has been home from hospital on one of his tiny hands.
The Yarra Junction bub was born with a birth defect called gastroschisis, which has kept him in hospital for the eight months of his life.
But mum is preparing to bring her little miracle home to the Yarra Valley.
Jaylen Wayne Betka Cornish was born on 1 December 2010 at 1.45kg, six weeks premature. He was born almost the size of a Beanie Buddy teddy bear.
Eight months old, he is not much bigger at 6kg, which is the size of a four to five month old baby.
Katie, 20, said she was told about Jaylen’s condition during her fourth ultrasound.
“I just sat in the car and cried when I found out,” she said.
She had gone to the doctor’s for a check-up on her own.
“It was heartbreaking to go home and tell everyone there’s something wrong,” she said.
“We were so scared of losing him.”
Gastroschisis is when a baby is born with a defect, or hole, in the abdominal wall during development. Some of the bowel escapes through this hole and continues to develop outside the baby’s abdomen.
Katie said Jaylen was lucky to come out when he did because his intestines had blockages and twists, and he wasn’t growing.
“He went into surgery two hours after he was born,” she said, where the doctors fixed a hole in his stomach.
“It wasn’t pumping like a normal stomach and that’s when we realised he would be in hospital much longer than we thought.”
Jaylen was known to have one of the worst cases of gastroschisis at the Monash Hospital. He has been through a rough journey, having continual infections and viruses.
His surgeries have so far been unsuccessful and his little tummy does not work. He is fed on a continuous drip with 10ml of fluids every hour, and an overnight mix of proteins and vitamins, called lipids, to help him grow.
Katie said there was not much else the doctors could do for Jaylen at Monash.
He will soon be transferred to the Royal Children’s Hospital where Katie will undergo an intensive three-week course to learn how to use the machines Jaylen needs to survive, and how to keep his home environment sterile.
“He has got a central line into his heart, so we have to watch for infections,” she said.
“That bad infection he had usually puts an adult into ICU and he actually fought it.”
“It will feel good to have him home, it will be hard work, but we won’t have to travel three hours each day.”
Katie wants to help raise awareness for her little boy’s condition, which is becoming more common.
One in 2225 babies are born with gastroschisis but many people don’t realise it exists.
Most of her help and information has come from websites and forums in the United States.
“But many parents don’t get to take their children home because they pass away or are stillborn,” she said.
“We’re lucky he came out when he did.”
Unlike many other gastroschisis births, Katie had a natural labour that only lasted an hour.
“They (the doctors) weren’t sure if I could, but he eventually had the strength to breathe on his own, my little warrior,” she said.
Katie doesn’t know what is ahead but she knows Jaylen will be connected to cords throughout his life.
Katie eventually wants to help raise money for parents who cannot afford the lipids, at $400 a tin.
Monash Hospital has been paying for Jaylen’s supply but many other lipids can destroy the liver, and 75 per cent of babies with gastroschisis need a liver transplant.
“They’d love all patients to be on it but it’s too expensive,” said Katie.
Katie took Jaylen to the Powelltown v Yarra Junction game last Saturday at Yarra Junction where the teams wore green armbands for the world wide Gastroschisis Awareness Day.
Local primary schools such as Wesburn Primary School, which Katie attended, and Milwarra Primary School, will show their support by having “green days” in the near future.
People can show their support on Katie’s Facebook page at Gastroschisis: Our brave little boy.