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Boy with half a heart all smiles despite fight for life

LITTLE FIGHTER: Casey Williams and the Bundaberg community is rallying together to give Noah Lammi a big birthday bash. He was born with only half a heart and wasn't expected to live to his first birthday. Photo: Max Fleet / NewsMail
LITTLE FIGHTER: Casey Williams and the Bundaberg community is rallying together to give Noah Lammi a big birthday bash. He was born with only half a heart and wasn't expected to live to his first birthday. Photo: Max Fleet / NewsMail Max Fleet

WHEN little Noah Lammi came into the world, his adorable smile and placid nature gave no hint he was secretly fighting for his life with every breath.

While turning one is a big milestone for most children, it's one doctors said Noah would never reach when he was born with hypoplastic left heart syndrome, also known as half a heart, a condition that affects one in 10,000 births world wide and only 60% of babies survive.

But the little miracle has beaten the odds and his doting mum Casey Williams is thrilled her little boy will turn one next Monday, an occasion made even more special with the Bundaberg community rallying behind them to throw a party for Noah.

While all seemed well when Noah was born on July 7 last year, things took a turn for the worst at a newborn photography session when he was four-weeks-old.

"I took Noah for his new born photography session with Cassandra Kirk Photography - it was Cassandra who said I should have him checked over. I knew there was something different, but didn't think twice as my private midwife had seen him a number of times," Miss Williams said.

Mrs Kirk, who took on the photo job by chance when she had a cancellation, said when Noah was placed in certain positions, he was breathing quite rapidly and she thought it best to mention it.

"He was struggling quite a lot, deep breaths that didn't seem normal," Mrs Kirk said.

"Noah was also a sleepy baby, very easy to photograph, and so I had to say something."

Miss Williams took Noah to the baby health clinic, who immediately advised she take him to the emergency department who had him flown to Brisbane Mater Hospital where he remained for the next five months.

"It was 3am at the hospital and we were taken into a family meeting and told to prepare for the worst, and to hold him as much as possible as babies who have this condition normally only live between three to five days after birth," Miss Williams said.

"There were many doctors, and as it wasn't picked up until he was four weeks old, we were told there was no chance as they don't do the surgery that late - and here he is about to turn one.

"They showed us pictures of a normal heart and a heart like Noah's. The whole left side was too small, they said. 'Noah's right side has tripled in size as it's doing all the work'."

The specialists gathered for a meeting to discuss plans for Noah.

The family had three choices - the first was to do nothing and he would die within days; the second was to rebuild his heart, which was something no one wanted to do, and the third was a three-stage surgery with only a 60% survival rate.

"It was with luck one doctor agreed to do the three-stage surgery and on August 8, two days after they first picked up the syndrome, Noah had his first open heart surgery," Miss Williams said.

"It wasn't the surgery that scared me the most, more that we could lose him any day. We stayed in Brisbane for five months before Noah could have his second operation.

"In the time there, we were told his heart was so weak and even a cough could kill him, but Noah ended up with whooping cough and was actually the first 'heart baby' to have this, so it was touch and go."

And while some may wonder how she could be so courageous after going through so much, Miss Casey said there was no other choice but to hang in there and make the most of the time she will have with Noah, a timeline no one can predict.

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