Page last updated at 10:11 GMT, Tuesday, 3 March 2009

'Our son is lucky to be alive'


Ben's story: In video

Carley Bowman is a journalist for BBC News. Her son has just had pioneering tracheal surgery.

He has already had two open heart operations as well other surgeries for life-threatening conditions. Here, she shares the latest ups and downs in Ben's story.

Our two-year-old son is lucky to be alive.

That was the professional assessment of the surgeon who had just spent four hours enlarging Ben's trachea.

Ben had been born with an extremely narrow airway. We had spent many days and weeks in hospital with what was often diagnosed as croup.

We had had no idea that the episodes of noisy breathing and difficulty breathing had such a sinister cause until three months ago when we met Professor Martin Elliott from Great Ormond Street Hospital.

He specialises in this little-known condition called Long Segment Congenital Tracheal Stenosis.

The day of the operation was unbearable. It was delayed for several hours while the doctors debated whether to go ahead. Ben's white cell blood count was abnormally high indicating an infection which could hamper his recovery.

How do you explain to a heavily sedated two-year-old that we were only trying to make him better?

Keeping a hungry and thirsty toddler entertained while trying not to let your already soaring stress levels sky-rocket is a mammoth task to ask of any parent.

As my husband and I eventually walked Ben down to theatre a wave of fear engulfed us. Handing him over was the hardest bit. We have done it many times before and it never gets any easier. Then it was trudging the streets trying to find a distraction.

The phone call from Professor Elliott came earlier than we expected. Ben was safe and the operation a success. We both cried with relief and utter amazement that our little boy had survived yet another life-saving surgery.

We were warned there would be ups and downs in Ben's recovery. And the doctors were right.

He spent more than a week in intensive care and most of that time on a ventilator helping him breathe and letting his airway heal.

Ben's biggest challenge though was fighting off infection. Bugs seemed to be consuming his tiny body as the doctors diagnosed one bacterium after another.

We spent as much time by his bedside as we could.

It was incredibly difficult watching him lie there with the tube in his nose but with his eyes open, filled with fear, silently pleading with you to make it all go away.

How do you explain to a heavily sedated two-year-old that we were only trying to make him better?

Ben Bowman
Ben after his latest surgery

The last thing he knew he was playing games with mummy and daddy and then he wakes up with tubes and drips everywhere and yet another big scar where they opened up his chest.

It did get easier though - gradually. Slowly we saw our happy, inquisitive, cheeky little boy returning.

By all accounts Ben's discharge from hospital was one of the fastest after a slide tracheoplasty.

But in reality we are still at the very start of his recovery.

The operation succeeded in making his windpipe wider but this in itself has created other complications that must be fixed by follow-up procedures.

We will be regular faces at Great Ormond Street for some time to come, but that is a small price to pay.

The tracheal team has given Ben a real chance to live a long life - how could we possibly thank them enough?

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