Auckland toddler born with deadly heart defect a ‘miracle’ – Stuff.co.nz

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Tallan Williams was diagnosed with rare heart defect ALCAPA when he was five months old and underwent open heart surgery.

The parents of a toddler born with a deadly heart defectare shocked at how well he is doing nearly two years on.

Tallan Williamswas diagnosed withALCAPA of the heart, a syndromeaffectingjust one in every 300,000 live births, after a chest x-ray when he wasfive months old.

He was rushed into open heart surgeryand remained in Starship Children's Hospital for 54days.

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Tallan Williams shows off his fading scar from having open heart surgery at five months old.

Now, on Heart Kids' Little Heart Day,his mum Darcy Williams describes him as a miracle.

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Looking back on Tallan's time inhospital, Williams, from Conifer Grove in south Auckland,said they didn't realise how close he was to death.

His symptoms had previously been put down to colic a condition that causesexcessive crying inbabies.

But when he arrived at hospital,his heart was functioning at just 8 per centwhen the normal range is between 50 and 60, Williamssaid.

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Tallan's symptoms were originally put down to a simple case of colic - but it was much more dangerous than that.

Because of that, nurses watched Tallan all night.

His dad,Jordan Williams, said when they eventually left the hospital, the nurses told themit was the "scariest shift" they had worked.

A home care nurse was assigned to Tallan and visited every day, dropping to twice a week, then once a week, to notneeding to visit after just a couple of months.

Tallan then began hitting milestones: Talking at seven months, walking at 11 months and potty training.

"He did everything [doctors] said he wouldn't do," Darcy Williams said.

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Tallan has now been cleared by medical professionals to do anything a child his age can do.

Doctors also told Tallan's parents that he wouldn't be able to go to kindy.

But at his latest clinic appointment, he was cleared to do everything a child of his age can do.

"He is like a miracle, really. He really is."

Williams said there was a possibility Tallanwas also suffering from another heart defect called PAPVD.

Abigail Dougherty/Stuff

Tallan with his siblings Kayzlee, left, Dakotah, and Dallas Williams.

While it was concerning, as she didn't want him to have another surgery, doctors had said it was something he could live with and not something that needed to be dealt with urgently.

Now, the family is waiting for Tallan's next clinic appointment in March. They hope appointments will soon be able to decrease to once every six months.

"He's doing amazing," Williams said.

WHATIS ALCAPA?

ALCAPAstands for 'anomalous origin of the left coronary artery from the pulmonaryartery' and affectsthe heart, according to the NZ Organisation for Rare Disorders (NZORD).

The syndrome affectsthe heart's arteries and, if left untreated, results in the death of 90 per cent of infants with the condition.

Symptoms, which includepain or distress in a baby, are often mistaken for colic,NZORDsaid.

WHAT IS PAPVD?

PAPVDstands for 'partial anomalous pulmonaryvenous drainage', the Pediatric Cardiac Surgery Inquest Report said.

It occurs when one or more of the pulmonary veins drain to the left atrium while the other vein is connected to the right atrium.

It results in the right side of the heart having to work harder and is often associated with complex cardiac defects.

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