Our baby needs a heart

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She glances at the toddler playing a short distance away in the garden. How much longer will she have the privilege of seeing her son playing like this?

There’s a cellphone on the table in front of her. When it rings she answers immediately. The phone is never switched off because the call could come at any moment, the call that could save young Lian Marais from certain death.

The one-year-old has nearly died twice of heart failure and doctors say the damage to his heart is so severe he won’t survive beyond the age of two. A heart transplant is his only hope.

If that happens Lian will make history as the youngest person in South Africa to receive a donor heart.

His parents, Ruan (24) and Lee-Anne (22), of Pretoria, live from day to day, waiting for a call from Christiaan Barnard Memorial Hospital in Cape Town that a donor heart has been found.

It could happen as soon as tomorrow – or never.

Lian was born without complications last January, a sturdy 3,6 kg baby apparently in good health. At his routine check-up at 10 days everything looked completely normal too.

At five weeks he began vomiting uncontrollably, his breathing became abnormally fast and there was blood in his urine. Ruan and Lee-Anne raced him to hospital where he was put on a ventilator in intensive care.

Doctors diagnosed heart failure. No one could say what had caused his condition only that it was extremely rare in babies.

With Lian’s heart functioning at 20 per cent everyday activities are exhausting and life-threatening for him. When he walks around outside for a while, drinks a bottle or cries loudly his heart works as hard as the heart of an adult who has run a gruelling marathon.

“We live in days, not in years. That’s why we make every day something big and important,” Lee-Anne says.

Read the full article in the YOU of 1 April.

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