BREAKING DOWN: Casey Williams is struggling as she waits for son Noah Lammi to have surgery to save his life.
BREAKING DOWN: Casey Williams is struggling as she waits for son Noah Lammi to have surgery to save his life. Mike Knott BUN040117NOAH8

Mum's anguish as boy's lifesaving surgery put on hold

TODAY is Valentine's Day, a day the heart should be beating strong, but for a Bundaberg mother her heart is broken, just like her three-year-old son's.

Casey Williams and her son Noah Lammi have been in Brisbane for five weeks waiting for Noah to have lifesaving heart surgery.

The procedure has now been cancelled six times and Ms Williams has had enough.

Noah was born with a rare condition called hypoplastic left heart syndrome, which means he only has half a heart.

He was diagnosed just after birth and doctors said he wouldn't survive.

But time was on Noah's side - two open heart surgeries and three years later, he's proved doctors wrong.

Sadly, though, time is now running out for Noah, who needs a third lifesaving operation as soon as possible.

The procedure, a fontan closure, had been scheduled for January 9 at Brisbane's Lady Cilento Children's Hospital, where surgeons will connect the the bottom half of Noah's heart to his lungs to help oxygenate his body.

The vital third surgery will keep Noah alive until he is old enough to have a possible double lung and heart transplant.

But that date has come and gone and Noah remains in limbo.

Ms Williams said her heart broke yesterday when she was told the surgery had been cancelled for a sixth time.

She said she was at her wits' end.

"I honestly just want a normal life but I can't," she said.

"I don't get that choice because without (the operation) he will die."

She doesn't have a clue when the surgery will be now.

The mother of three said the burden of Noah's condition, living in Brisbane and playing a waiting game was becoming too much.

"This week I am done. This year I am done with," she said.

"(After) so many years of struggling and hurt and medical stuff, I thought this year was the year things will work out and it's a major wake-up call."

She said she felt helpless that long-term plans for Noah were up in the air and there was nothing she could do.

As well as needing an operation, Noah, who is autistic, can no longer take part in an intense intervention program in Bundaberg he was in with hopes to get him into mainstream schooling.

"Every single hope ... I had is just slipping away and there is nothing I can do about it, I am just stuck in a gridlock," Ms Williams said.

"Life definitely was not made to be easy.

"So today I am done."

Ms Williams said she suffered anxiety and nightmares every time Noah's surgery was cancelled, and she was emotionally breaking down more frequently, as well as struggling financially.

"Everything seems a thousand times harder then what it should be," she said.

Ms Williams told the NewsMail after Noah's surgery was first delayed she understood that another child with an emergency case had taken his place and was okay with that because they had once been in the same boat. 

"There was a day we took someone's place and it was the difference between life and death for us," she said previously.

Read the previous stories here:

Noah's surgery on hold

Young fighter about to have third surgery

All smiles from infant with half a heart