Brave-hearted infant is now a fearless four-year-old

PUBLISHED : Sunday, 18 November, 2012, 12:00am
UPDATED : Sunday, 18 November, 2012, 3:01pm

Today our little girl and middle child is four years old. She is full of energy, occasionally cheeky, and more than a match for her older and younger brothers. She is determined, fearless and, as we have always known, amazingly brave.

For evidence of just how brave she is, we need only look to the scar that runs halfway down her chest, a reminder of the open-heart surgery she underwent as a baby.

Our daughter was born at 37 weeks weighing a little under 3kg. She was a happy and reasonably settled newborn who, like her older brother, was always a bad sleeper.

Yet she was so very different from her older brother. She didn't feed well and attempts to introduce solids at six, seven and eight months failed miserably. On top of that, she was too tiny and just not growing.

Both her weight and my instinct told me something was wrong.

At the age of nine months she was as admitted to hospital with pneumonia and that was when a doctor first heard a heart murmur. Heart murmurs are reasonably common, but an electrocardiogram (ECG) revealed some abnormalities.

We were referred to the paediatric cardiac unit at Queen Mary Hospital, where our daughter was diagnosed with two serious congenital heart defects. The following day we met the surgeon who would operate on her. And on the Monday she was admitted to hospital with open heart surgery to follow the next morning.

The weekend before our daughter was admitted to hospital my husband and I said very little. And while we had the operation and recovery explained to us several times and we knew the risks and the worst-case scenarios, we closed our minds and hearts to those. We focused on an image of our happy, healthy daughter after her surgery.

Her surgery was considered an emergency procedure. No second opinions. No other options.

Even now, nearly four years since her operation, there aren't really any words that can describe that day. It exists in a vortex of pain and dread that lay deep in our stomachs. It was a day of prayer, of whispered hopes and of a steely determination to see our daughter wheeled out of that operating theatre better and stronger than ever before. It was a day of pacing and more pacing, of sweaty palms. Of just pure fear.

But it was also a day of great relief, and eventually joy. About 45 minutes before the end of the surgery, a warden came trundling along the hospital corridor where we had spent the last five hours, pushing a child's incubator bed.

As our daughter was the only child behind those surgery doors, we knew it had to be for our little girl. Excitement is not the right word: it was more like relief. It flooded through us, swamped us, engulfed us. We hardly dared believe it, let alone celebrate it.

With the operation finished, our daughter was quickly wheeled into the cardiothoracic ward. She was covered in wires, and would be for the next 48 hours, which is how long she was in intensive care. For the first 24 hours after surgery, a cardiologist sat by her bed. She was monitored intensively and was kept sedated.

Our visits to the intensive care ward were brief and short, as hospital policy required. My husband and I took turns to keep vigil outside the ward. Our daughter was sedated, but we couldn't leave her.

Maybe it was more for us than her, but one of us had to be there for when she slowly, and seemingly painfully, woke up.

The bravery in this story belongs to our daughter. Within three days of open heart surgery, she was sitting up in bed, smiling and laughing, despite the operation, the anaesthetic, the time in intensive care, the needles, the drips, the wires and pacing, the wounds and dressings, the check-ups and medication.

And now, apart from a slight phobia about hospital stays, our daughter seems to bear no scars from that day, apart from the obvious physical one.

It is not a time we remember or even talk about very much. There is no need to. Because we need only look at the healthy, inquisitive, bundle of energy that is our little girl today to know that focusing on the future is all that matters.

There are so many people who helped our daughter through her surgery. From those at the Red Cross who scoured the city for the very rare type of blood our daughter would need, to the Children's Heart Foundation, who offered accommodation for parents accompanying their children admitted to the paediatric cardiac ward at Queen Mary, to the surgeons, doctors and nurses. We shall remain forever in their debt.

Rebecca Tomasis, a mother of three, was co-winner of the first Proverse Prize for unpublished writers