SITTING up on a play mat with trucks and trains in front of him, baby Will gurgles and coos at his older brother Michael.

Moments later, he is fussing in his mother's arms.

This is nothing remarkable for a baby.

What is remarkable is he had open heart surgery last month.

This little boy, fondly known by his family as Mighty Will, has been on an incredible journey of survival since his birth 10 months ago.

Will was born three months premature after his mother, Karen Simmons, lost most of the amniotic fluid from her womb.

But not only was he premature and spent three months in the neonatal intensive care unit of the Royal Brisbane and Women's Hospital, he had a hole in his heart.

The Simmons' story starts when Karen's waters broke on July 9, for the second time, and she was flown straight from Rockhampton Hospital to Brisbane.

She was in labour when she was flown south.

"We managed to settle down the labour that night," Karen said at her South Rockhampton home this week.

It was after the staff at Brisbane did a scan that Will's heart condition, Tetralogy of Fallot, was discovered.

Karen said it was a big hole in the chamber of Will's heart, not in the wall where it would have healed over.

She spent the next two weeks in bed, in labour and in pain, as she fought to carry Will as long as possible.

Karen also had the same two questions constantly running through her head - were the doctors going to open her up and were they going to operate on her unborn baby?

Meanwhile, her husband Andrew was fast learning to be both a mother and a father to Michael, who was two years old.

After doctors discovered Karen had a urinary tract infection, they decided it was time for Will to exit the womb.

It wasn't until two months later that Karen, Andrew and Michael were able to see Will's face, as he was on an oxygen machine the whole time.

"It took ages to feel like this (Will) is my baby," she said.

"The bonding process took a long time."

Karen said during those two weeks in labour in hospital, she'd seen other premmie babies and she believes Will did not look like the other premmies, but more like a normal healthy baby.

The family lived at Ronald McDonald House during this time and the staff were very supportive.

"We didn't see home for three and a half months," she said.

"There were so many Rocky mums, so many Rocky premmies.

"You met families that had been torn apart."

There were some mums who had left four or five kids behind at home.

Doctors had hoped to wait until Will was a year old before operating on his heart, but after three hernia operations and lack of oxygen in his bloodstream, they operated on little Will's heart when he was nine months old.

"He went blue often," Karen said.

She said Andrew and she had partly been in denial about Will needing heart surgery and had not done any research.

However, Will's condition deteriorated faster than expected.

"He was having pulmonary seizures," she said.

After taking Will to Rockhampton Hospital's emergency department on April 11 where the oxygen levels in his blood were checked, doctors flew him to Brisbane immediately.

"Babies are meant to have 100% (oxygen saturation levels). He was down to 10%," Karen said.

Oxygen saturation, SAT levels, refers to the level of oxygen carried by red blood cells through the arteries and delivered to internal organs.

Will arrived in Brisbane at 2.30am on April 12, and was on the operating table the next day.

"It was so quick," Karen said.

"I think the heart surgery happened too fast to grasp the magnitude of the situation."

They said goodbye to Will at 1pm and saw him again at 7pm, even though he was only on the operating table for four hours.

"He looked puffy," Karen said.

"He didn't smile for about five days.

"He was giving people sideways glances as if to say: 'Don't come near me. Don't you cut me open'.

"Eight days after surgery, they discharged us."

And just how did this family cope with this rollercoaster journey?

Prayer, faith, believing in miracles, and support from family, friends, Andrew's workplace Hastings Deering and members of their Peace Community church.

"We wouldn't have done it without prayer," Karen said.

"I don't how some people can go through something like that without faith or believing that miracles can happen, because we certainly had a few."

And as little Mighty Will's body grows stronger, he's definitely on the way to catching up with babies his own age.

"As soon as he came back (home), he started eating solids," Karen said.

"He just got so chubby.

"I think his mental and other skills are right up there with a 10-month-old, but his size is there with a seven-month-old."

And to top it off, Will cut his first tooth five days ago.


William Joseph Christian Simmons

Due: October 25, 2011

Waters broke: July 9

Born: July 25

Weight: 898 grams

Home: October 19

Heart surgery: April 13, on operating table for four hours

Home: April 21

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