Page last updated at 09:09 GMT, Monday, 1 September 2008 10:09 UK

'I know my son will never be normal'

By Carley Bowman
BBC News

Ben Bowman
Ben at just three hours old

"Your baby has a life threatening heart defect." Those are some of the most frightening words you can hear during pregnancy

.

And so you are catapulted into the world of congenital heart disease, where suddenly your baby is "high risk" and all the talk is of your "special child", survival rates and surgery, not morning sickness, back pain and whether to have a natural labour.

It was at the 22 week anomaly scan that my world came crashing down.

The sonographer was unhappy with the ultrasound and referred us immediately to a foetal heart specialist.

After a detailed scan of the baby's heart we were whisked into a small side room. It was obvious something was seriously wrong.

Why else would there be a box of tissues on the table?

'Utterly hopeless'

Then came the diagnosis - tetralogy of fallot with severe pulmonary stenosis and hypoplastic (underdeveloped) pulmonary arteries.

And another bombshell: There was a one in three chance our baby would have Down's syndrome or another genetic condition.

I remember some discussion about terminating the pregnancy (initiated by the consultant) and, in truth, at that moment it did feel utterly hopeless.

That was the moment that I started to grieve for the loss of my "perfect baby".

Though looking back now, I realise it was not just the baby. I was also mourning the loss of a "normal" pregnancy.

Having a baby is supposed to be natural and beautiful and full of enjoyment and anticipation, isn't it?

From that day - 2 August 2006 - my baby's life hung on a knife edge.

I'd never done this before. Where was the laughter and joy? Why were we talking about which drugs would keep our baby alive during the first hours of his life and not what name we would give him?

What had we done to deserve this? What had I done to damage my baby so spectacularly?

WHAT IS TETRALOGY OF FALLOT?
A normal heart compared to a Fallots heart
Tetralogy means 'four', hence there are four main things wrong with the heart:
Sub-pulmonary stenosis: A narrowing below the pulmonary valve
Ventricular Septal Defect: A hole in the wall between the ventricles which means that blood can leak from one side to the other
Over-riding aorta: The entrance to the aorta, which should only carry oxygenated blood, lies over the VSD allowing the right ventricle to pump some deoxygenated blood directly into it
Thick right ventricle: The right ventricle thickens as it forces blood into the narrow pulmonary artery

After a series of horribly invasive tests, we discovered that apart from his heart, our baby appeared otherwise healthy.

The relief flooded over us in a wave of euphoria. Bizarre really, as I still had a very sick baby growing inside me.

But somehow this felt less daunting now and we were gradually accepting the idea that, while it would be a long road, our baby could be saved by the right treatment and surgery.

Reassurance

The full force of the NHS swung into action. Ultrasound scans were ordered every two weeks, we had specialist nurses to counsel us and visited the hospitals where baby would be treated immediately after his birth.

There was reassurance at all times that he could be saved and we had to believe it, otherwise we would never have got through the very dark times.

As I began to research my son's condition, it became increasingly clear that congenital heart disease affects many families in the UK.

About one in 145 babies are born with cardiac defects. Some are easily treatable and have no, or very little, impact on the child's life.

Others are more complex, like my son's, and some are inevitably fatal.

It is a risk that is rarely publicised and there is much debate about whether there should be an automatic screening programme for babies.

All of the parents I have met along the way would say: "Yes, absolutely".

The one thing you learn very quickly is that each child's condition is individual and there are no definitive answers.

It is also difficult to determine what causes congenital heart disease. Alcohol, drugs and smoking during pregnancy are thought to be risk factors and some conditions are genetic.

Our son, Ben, was born four weeks early by caesarean. He was unexpectedly pink and 'healthy' looking.

Despite this I had just one minute to cuddle him and make his acquaintance before he was whisked away to special care.

Open heart surgery

As it turns out, he had more pressing medical needs than his heart.

He was born with an imperforate anus that required emergency surgery on the second day of his life.

That was the beginning of many anxious waits outside the operating theatre for Ben's father and I.

He has been under the knife five times so far for his varying medical problems.

The most frightening is open heart surgery - no question.

Handing Ben over to his surgeon and knowing there was nothing more I could do to protect him was agonising.

The hours dragged by, thoughts filled with: "Will I ever see him again?".

Ben Bowman in intensive care
Ben in intensive care after a second heart surgery

There were no tears - at least not for me - until I saw him wired up and kept alive by machines in intensive care.

It was a mixture of relief and realisation of how seriously ill he was.

Ben is a fighter and that makes me proud. No amount of sedation could keep my little boy quiet.

Within hours he was struggling to pull out the ventilator and within just days was eating, drinking and playing like any normal child.

But he is not normal. He never will be. That is the one thing they do not tell you when a heart problem is first diagnosed.

There is a gradual sense of realisation that you may always be one of those families with "special needs". And questions - there are always questions that need answering.

Will Ben need more heart surgery? Yes.

What are his long-term chances of survival? Good.

Are Ben's problems genetic? Unknown (as yet).

Will any future children we have be at greater risk? Possibly.

Mother's instinct

The NHS has, on the whole, been wonderful. There are so many stories criticising patient care but there are good tales to tell too. Thankfully ours is one of those.

The Royal Brompton Hospital, in London, has been truly outstanding in its cardiac care.

As has Chelsea and Westminster Hospital's treatment of all Ben's non-heart problems, and we are on first name terms with many of the A&E staff at our local.

We have been fortunate enough to skip all the usual GP referral processes and waiting lists are not in our vocabulary.

I guess that is because when it is truly life-threatening and it involves a child, the earth is moved to make sure the right treatment is delivered at the right time.

Ben Bowman
Two surgeries down and ready to tackle the world

That is not to say it is all plain sailing. We have had to push hard for tests and investigations which some doctors claimed Ben's symptoms did not warrant, including life-threatening reflux.

So far, mother's instinct has always been right.

For now Ben is well. His physical development has been delayed and I spend much of my life trying to force feed him cheese, cake, biscuits and crisps to increase his calorie intake.

I get very disapproving looks from other parents and have vaguely contemplated wearing a sign on my back saying: "Not a bad mother: On doctor's orders".

We still have daily reminders of how poorly Ben has been - he is partially fed through a gastrostomy feeding tube in his stomach, for example - but they are also reminders of how far we have come.

There is no doubt that we have had a difficult time, but there is also no doubt that Ben is one of the lucky ones - he has a future.



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