Kiana Alder kisses her sixth-month-old baby Jacob Alder-Bull. Jacob was born with a cleft palate and was diagnosed with Pierre Robin Syndrome.
Kiana Alder kisses her sixth-month-old baby Jacob Alder-Bull. Jacob was born with a cleft palate and was diagnosed with Pierre Robin Syndrome. Claudia Baxter

Brave little battler keeps smiling

SIX-MONTH-OLD Jacob Alder has lived in hospital for half of his life, and has had four operations and dozens of tests - but it seems nothing will stop him smiling.

The Redbank Plains baby was diagnosed with Pierre Robin Sequence shortly after his birth, when dad Allan realised "something was wrong" when he tried to feed his third child for the first time. Doctors realised Jacob had the classic symptoms of PRS: a cleft palate, an under-developed lower jaw and serious respiratory problems.

Mum Kiana Alder said she had not known anything about the condition before the diagnosis.

"It was tough, you know a bit about what a cleft is but when the doctor comes to your bed you just hear words - I wasn't prepared at all and there wasn't any information available like there is for other conditions."

"I spent a week in hospital with other mothers and babies, lying there not being able to hold my own baby was terrible."

Out of hospital, Jacob still struggles to move due to a permanent breathing tube and poor muscle development and needs to have his airways suctioned regularly.

"We feed him through a tube and he can't sleep on his back because it would affect his breathing," Mr Alder said.

Mrs Alder said Jacob, like many other PRS babies, often had co-existing health problems.

"We've had a couple of scares with Jakey," she said.

"At seven weeks we were Christmas shopping and he was sick ... he ended up back in hospital and there was a fear his heart would give out.

"One of the hardest times was when he had a problem with his food and we had to starve him for eight days, being asked to do that to your own child is terrible."

Mrs Alder said she wanted to start a support group for other families with PRS babies.

"The professional help we have with Jacob has been great, but I wish I'd someone there to talk to me," Mrs Alder said.

Families interested in contacting Mrs Alder can email jaml_101@hotmail.com.



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