Page last updated at 10:48 GMT, Friday, 16 January 2009

'My son must have this surgery'

Ben
Ben faces major surgery

Carley Bowman is a journalist for BBC News.

Her two-year-old son is about to undergo pioneering tracheal surgery at London's Great Ormond Street Hospital.

He has already had two open heart operations to repair a condition called Tetralogy of Fallot, as well other surgeries for serious conditions.

Here, she shares her thoughts and experiences as Ben faces his toughest challenge yet.

I found it difficult to sleep last night.

I drank too much wine for one - trying to ignore what was about to start.

Because now the surgery cycle begins again.

My two-year-old son Ben is about to have his sixth operation - and probably the most serious.

We have just met his surgeon, Professor Martin Elliott to find out exactly what he is going to do to Ben.

New home

We spent the first hour being shown around and getting to know what will soon become our new home - Great Ormond Street Hospital.

It is hard to understand how sick Ben is when he seems so well
Carley Bowman

My father-in-law came with us to entertain Ben so we could listen to what we were being told and remember to ask the right questions.

We were taken into a little meeting room to sit down with the professor, the nurse Clair Noctor and a psychologist (there to observe but ultimately another NHS resource we can call on should we need).

The professor then talked us through what they would do to fix Ben's trachea and give him a chance at living.

Inevitably, these conversations are very clinical and I kept glancing at our little boy sitting next to his grandad playing with his Finding Nemo stickers.

Could it really be him they are talking about? Ben has been so well since October.

No dashes to hospital in respiratory distress, no long hours in A&E, no arguing with the junior doctors about whether Ben has croup or not (he doesn't - his trachea is severely narrow which gives him croup-like symptoms).

It is hard to understand how 'sick' Ben is when he seems so 'well'.

But they tell us that a common cold could kill him.

A small globule of mucus could get stuck in his airway and he will have just three minutes to be saved - not enough time even to call an ambulance.

That is frightening. We were aware of this already, but we had become so used to living with that level of stress that I think we had become a bit complacent.

Scary again

Now it feels terribly scary and real again.

Ben
Ben has already undergone heart surgery

As my mum said, it is like he is a timebomb that has been ticking since he was born.

I guess it is a race to get him in for the operation before he goes down with any infection.

Just four days to wait.

Professor Elliott seems confident Ben will get through the surgery okay.

It will be about 6 hours in all - including all the anaesthetic gubbins before and after.

That is about the same time as Ben's second open heart surgery.

It will be on heart and lung bypass again.

It is funny. All this is so familiar and yet this time I feel completely differently about it. My husband is the same.

Tempting fate

I feel like we have tempted fate too many times and put Ben's life in other people's hands enough.

It feels like we are living on borrowed time
Carley Bowman

I cannot possibly imagine how his body could cope with yet another major operation.

Surely something has to go wrong this time? It is tampering with nature after all.

It feels like the more he has done, the greater the chance of him dying.

Logically, I tell myself that he has a great chance of being fixed but in reality, this time, it feels like we are living on borrowed time.

That is so morbid, but it is just an emotion.

Both my husband and I are feeling it even though we don't really say it.

That is why we were desperate to take Ben to Disneyland Paris over the Christmas holiday.

It felt like our last chance to do something special as a family.

Even if Ben gets through the operation we just don't know what life will hold for him.

Ben is lucky in that Professor Elliott has done 65 out of the 240 slide tracheoplasties ever undertaken in the world.

Degrees of success

He is the best of the best. But there are varying degrees of success with this surgery.

Ben
At the moment a cold virus could put Ben's life in danger

Making his airway wider is the purpose of the operation.

If they do not do it then he will eventually die, either from a complication from an infection, or simply by outgrowing the size of his trachea to the point where he cannot breathe anymore - an awful death by anyone's standards.

He has to have this surgery - that is what I keep telling myself.

Even if it is the most successful it possibly can be Ben's airway will never be normal.

It will be much shorter for a start. He may have problems eating and drinking as the relationship between the oesophagus and the windpipe is altered.

He will never be able to smoke and will likely only ever withstand moderate exercise.

In other words, he is not going to be an athlete (his heart has already beaten him to that limitation).

He may need more operations in the future. We even had some discussion about ballooning, stenting and tracheal patches using Ben's own stem cells - a treatment pioneered just a few months ago in Spain.

And if all else fails, there is the option of transplant.

Uncertain future

The difficult thing to take in is that the slide tracheoplasty is a relatively new surgical procedure.

The oldest surviving patient is now about 18.

There is no way of knowing for sure if this is a permanent cure for Long Segment Congenital Tracheal Stenosis.

The doctors believe it is - but they just do not have the research to back it up yet.

And so the cycle begins. Countdown to surgery, packing in as much as we can in the few days we have left.

Pretending we're coping magnificently but avoiding being in social situations where small talk makes you want to scream and you can see people's eyes shifting uncomfortably when you answer their 'how's things with you' question with our latest saga.

It's impossible not to talk about it.

It is all we think about. It is our life.

So why am I writing this? It helps to share - a cliché I know, but true.

I feel a duty as a mother and a journalist to make a record of what we are going through.

Ben seems to be quite a rare medical case and his story deserves to be told.

I hope it helps us, other families and ultimately Ben himself when one day in the future he gets to read this.



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