Proud of our NHS

Back in 2008, my wife and I decided to have another child, having already had a little girl and being very happy. As part of her medical care while my wife was pregnant, we were given an appointment at our local hospital, the Southampton General, for an ultrasound scan.

We turned up for our appointment and the Doctor said the scan was fine - there was no problem with the baby. By chance, I happened to see a poster on the wall of the waiting room saying that the hospital was looking for volunteers so they could have more experience with a new, higher definition ultrasound scanner that had arrived. So, we thought we would take part to help the hospital.

After the scan, the Doctor, who in subsequent years we have got to know well, told us that he had noted an interesting condition concerning the baby's heart. At the time he wasn't too worried, but it was something to look out for.

At every step, there were difficulties. The new baby was the wrong way round in the womb and wouldn't turn back the right way. Finally, after a caesarean delivery, the new baby was born, a boy who we called Benjamin, after my father.

That was it, we had our baby, we thought. As they had noted a point about the heart, they carried out further, much more detailed tests now the baby had been born. Then we got the news that changed our lives. The baby had a much more serious heart problem than they had previously suspected. We had more meetings with the consultant we had seen before and he advised us that our son had to have an operation in the next few days or he would die.

The problem was Benjamin's little heart suffered from "aortic stenosis" - his aortic valve didn't work properly. Within his first two weeks he had what can be described as a "balloon" operation, in which a balloon catheter is placed into the aortic valve and inflated, thus opening the valve to allow the blood to flow more freely. He also appeared to have other complications concerning his heart. I don’t want to go into detail, especially as it is upsetting to me, but his situation was complicated and the consultants were worried.

At the time, it was horrendously traumatic. I had, by and large, a sheltered life until that point free from any unusual trauma or problems; this hit home very hard. We did a lot of crying and pondering "why us"? The staff at the hospital were very supportive and at the General, there is a fantastic section called Ocean Ward for children with cardiac issues. They could not have been more helpful. My heart broke when I thought of my son and his struggle to live. He had to undergo so many tests and scans of all types right from the start, during which he was often in pain or discomfort, or was distressed.

With enormous relief, we were told that the “balloon” operation, as I liked to call it, had been a success. I remember walking down the corridor at the hospital, with the sunlight streaming in through the large windows, and hearing the Doctor tell me it had gone well. Breathe.

As he grew, it became clear that these problems weren’t going to go away, no matter how much we mourned for the type of life and good health we had wished for our son. He had very regular check ups with the consultant at the hospital and we became very familiar with the hospital and the staff. Thankfully, in himself Ben proved to generally be a very happy boy, full of fun and someone who loved life.

And yet, as he grew from babyhood into being a toddler, it was clear there was more about him to cause concern than just his heart condition. As a baby, he had never quite looked into my eyes in the same way that his big sister had at that age. When we tried teaching him to talk, he would start off getting odd words, said in a rather guttural fashion, and then simply stop. Whilst he was a loving, affectionate boy, at least to his mother, he didn’t engage in the same interactions as other children. He was very different from his sister, who had almost instantly seemed to want to communicate and be involved with people. There was constant talk at our house, but none of it came from Ben.

At first we wanted to ignore it; it seemed a minor situation compared to his heart problem and the medication he had to have and the constant trips to his consultant to be checked over regularly. The time came though to mention it and soon we had another appointment at a different part of the hospital, where he was assessed. He was diagnosed as being autistic. More tears from Daddy. Of course, it all made sense. Once he was diagnosed, we started to get more help. He is by and large non-verbal, although he does use words in a symbolic, labelling way.

As he grew, his consultant became more concerned about his heart. The bigger he got, the more critical his complications were going to become. He had another, much bigger operation, to carry out repair work on the valves themselves. This was much, much more worrying than the one he had just after being born. Yet again, it was a success. Blissful relief.

As children often do, Ben recovered well and was soon back to loving life and having fun. At school, he had help from a very special teacher who gave him lessons just for him, helping him both with his physical abilities and his speech and communication. He seemed particularly popular with the girls. Some of the girls in his class would meet him at the school gate and hold his hand to guide him into the class. Their care, it seemed to me, must have arisen from the example of loving families in their own homes and their own caring nature.

Later, the Doctors decided that mechanical valves were needed to replace his existing, natural ones and Ben had more open-heart surgery to put them into place. Again, this was a success. Ben needed more drugs to prevent these artificial valves from clotting too much, in addition to the drugs he was already taking. Regular appointments at the hospital for check ups were built into our lives as a family.

The next year, he became very unwell indeed and had to be rushed into hospital. When his consultant saw his condition, he realised Ben needed to have immediate surgery or he would die very quickly. Ben’s surgeon is absolutely world class. With Ben critically ill, the operation lasted all night and part of a vein in his leg had to be used to replace tissue in his heart. The two artificial valves had to be replaced as well. The skill involved in such an operation, on a small boy like Ben especially, was extraordinary.

I was so traumatised by what was happening that I came close to breaking. I was at the absolute edge of what I could handle. Thankfully, the nurse in the intensive care unit who was looking after Ben (and not me) quickly spotted this and booked me an appointment with a psychiatrist looking after patients at the hospital. In essence, I completely unburdened my woes on her and this was the starting point for me of coming back to sanity. I also made use of the hospital’s chapel, which was open to anyone. I am not a religious person, far from it, but being able to sit in a large, nicely furnished, quiet room was calming.

Again, thank goodness, despite the serious challenges, the operation went well. We got the impression the operation was “one for the books”. Ben’s case is far from usual, with a number of complications, and my hope is they learn a lot from dealing with his case.

After each operation, Ben has to stay first in the intensive care unit for several days and then on the ward at the hospital for sometimes weeks at a time to recover. During these times he is constantly checked and monitored. His heart rate, blood pressure and temperature are all checked carefully. The nurses and other staff at the hospital are always very caring and professional in their approach. Whilst it is clear they are busy, we are always made to feel special and the centre of concern.

Two years later, Ben needed more surgery. The Doctors decided that the artificial valves weren’t working that well. A routine scan had suggested a problem and they quickly decided that it was urgent and that he needed another operation. This time, the artificial valves were taken out and replaced with ones from a pig.

Ben’s case continues to cause concern and within a year of this operation, he needed another one, his most recent as at the date of writing. Here, he needed another bypass as more of the vein in his leg had to be harvested to use in his heart and work was needed due to scarring from all the previous surgery he has undergone. More time at the hospital, in intensive care and on the ward. We know them and they know us after all this time.

Ben’s life is very different from most children. I walk by a school every day to get to the office and often there are young boys, perhaps even as young as Ben, out on the playing field, having orders barked at them by PE teachers. It reminds me how different my son’s life is from what I expected. By and large though, he is happy and loves life. He loves his Mummy and he loves having fun. We don’t think he has the deep, dismayed understanding of his condition that a child without his severity of autism might have. His future is uncertain, though really everyone’s is – Ben’s future just has much more uncertainty than other children.

The Doctors, Nurses and staff at our hospitals do the really important things in our society. Spending so much time in the intensive care unit and the special cardiac ward at the hospital has convinced me of this. Ben has, at every stage, received absolutely world class, state of the art surgery, treatment and care. He has also received huge amounts of medication to control his condition as much as possible. His recovery has also entailed physiotherapy. As well as the most professional treatment we could ever wish for, we have also been cared for with compassion and sympathy as individuals.

On the NHS, all of this has been provided to us completely free of charge.

If we had needed to pay for it, the fees would have eaten up all our savings and we would have been required to sell our home. Even then, I’m not sure that would have covered it all.

Actually, it’s not all free. We have to pay for parking our car at the hospital. I’m outraged, honest.

All of this skill, the experience, the extraordinary service, the compassion, the care – all for one poorly little baby boy. All for free.

It seems to always be fashionable to belittle Britain and British society. But the NHS is the best thing about British society. I cherish it for how it has helped my son. The enormity of what we have been through escapes me a lot of the time as I find it very difficult to think about directly; I don’t want to think about what my son has gone through or what he might have to go through in the future. When I do though, and I think about the NHS and what it has done for him and us, I am proud. I am proud that we have a system that enables such extraordinary care to be given to my little boy.