Family is number one

PROUD MOTHER: Kiana Alder with husband Allan Bull and their children Levi Alder,2, Jacob Alder-Bull, six-months and Mia Alder, 9.
PROUD MOTHER: Kiana Alder with husband Allan Bull and their children Levi Alder,2, Jacob Alder-Bull, six-months and Mia Alder, 9.

FORGET flowers and breakfast in bed, this Mother's Day all Kiana Alder would like is to wake up to all of her children at home.

Her six-month-old son Jacob has spent half of his life in hospital after he was born with a cleft palate and diagnosed with Pierre Robin Syndrome one week after birth.

The past six months have been tough for the Redbank Plains family, who have been in and out of the Mater Hospital as Jacob battled the serious respiratory and feeding problem symptomatic to Pierre Robin Syndrome (PRS).

Ms Alder said despite what her family had been through, she was looking forward to Sunday.

"It is going to be special mother's day for me because it will be my first with Jakey," she said.

"Since I've had Jakey, you really can't help but see the world through different eyes."

The mother of three said it was the simple things she appreciated most.

"The most I would ask for is having all my children at home. That would be unreal," she said.

"I don't want breakfast in bed, I don't want to go anywhere.

"After the last few months we've had, it's a luxury to be home all together."

For the first month and a half of Jacob's life he lived in the Natal Critical Care Unit.

Kiana and dad Allan were not allowed to stay at the hospital and described leaving him each day as heartbreaking.

"The worst part was when doctors were not sure if Jakey was going to make it," Ms Alder said.

"At seven weeks old when he had surgery, they were concerned for Jakey's heart.

"He was working too hard to breathe and they were worried his heart could just give up.

"They sedated him for a couple of days, purely for his own health.

"I remember grabbing my partners hand and walking over to Jakey.

"I said to him if you want to fight mum and dad are going to be here and we are going to fight with you.

"If you feel like you want to give up and you don't want to do this anymore, we understand.

"He's a very strong little thing, he's very determined to fight.

One of the hardest times for the Alders was when they had to starve Jacob for eight days because of a problem with his food.

"Being asked to do that to your own child is terrible," Ms Alder said.

Out of hospital, Jacob is fitted with a permanent feeding tube and a breathing tube to open his airways and stop him from swallowing his tongue.

Jacob has had four operations and mum is hoping there will not be many more.

"We're hoping this will be the last of his surgery," she said.

"Soon they will be taking out his feeding tube and putting a peg in his stomach so that we can feed him straight into his belly.

"When he is 18 months old, he will have his cleft palate repaired."

Jacob has 'severe end' cleft palate which Ms Alder described as "the size of a clinker".

"I think in 12 months time Jakey will be on the road to eating by himself," she said.

"It's just tragic now. He's so little.

"At six months old all babies want food and Jakey's the same.

"When we're eating as a family, he reaches out and wants our food.

"I can't eat around him anymore. I feel really guilty."

Despite the odds, Ms Alder said her son was a fighter.

"Even when the doctors were not sure if he was going to make it, I remember one of them saying to me, no matter what he goes through Jacob just smiles constantly."

While PRS is rare, it is becoming more common. Nearly one in 5000 babies are born with the condition in Australia each year.

"It is a very lonely and isolating syndrome for parents," Ms Alder said.

"When Jakey grows up and is less dependent, I have my heart set on trying to be there for other parents who are going through the same thing.

"My goal is to allow people to feel that they're not alone."

For now, Ms Alder is excited to spend the weekend at home with her family.

"To wake up and snuggle with my kids in the morning, that would be the best thing,"she said.



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