Craig's Story

Craig's story was first printed some ten years ago in the members' newsletter of the Wessex Children's Heart Circle. Please note that procedures and some physical attributes of the Southampton Unit may also have changed in that time.

Craig was not planned to arrive so soon after his older brother, but none the less, once we had got used to the idea of having a third child, we would not have considered doing without. Had I not been conscious at the birth, I would have sworn he had nothing to do with our family. His brothers were both over nine pounds each, and had hardly any, short blond hair. Craig, on the other hand, had given me the most painful of labours, and he was only six pounds fourteen and half ounces and had masses of spiky red hair. I called him my gonk!

We were due to leave the GP maternity unit in Sherborne at eight days, so on the seventh my GP examined Craig; he found a heart murmur and told me not to worry. I didn't, I had friends whose little girl had grown up with my eldest son and she had a hole in her heart that didn't hinder her at all. How naive I was!

It was another ten days before we had to see the consultant paediatrician at our local cottage hospital, he listened to Craig's heart and asked all the right questions - is he feeding, is he breathless? Then he told us he wanted to see us at our local general hospital in Yeovil to have an X-ray and ECG, and to come along to his clinic in three days time, but not to worry, it may be just a small hole.

Daddy had gone up north to help his brother move house and taken the eldest with him, that's how confident we were that things were not bad, so I took Craig to this clinic on my own. We reached that clinic with X-ray and ECG trace in hand, the nurse took them from me and went into the clinical paediatrician's room with them. A moment passed and the doctor came out of that room and went into an adjacent room, where the consultant paediatrician was. I had this uneasy feeling whilst watching these events that something was wrong. I was called into see the consultant who sat me down and explained that Craig's heart problem was a lot more serious than he had first thought and he had made arrangements for us to go to the Southampton General Hospital cardiac unit that afternoon. The bottom had just fallen out of my world.

We reached the unit and a nurse, a cot and a sterilising unit were waiting for us: an echocardiogram was done and I was taken into the sister's office so that the consultant cardiologist could tell me just what was wrong. I remember the drawing, I tried to listen to what was being said, but in fact I was just a blubbering heap. It was some days before 1 really came to grasp just how ill Craig was; he was three weeks old and I could lose him. The thought was almost too much to bear. Craig only had three chambers to his heart and the patent ductus that usually closes off at birth, hadn't.

It was decided that he was to have the ductus closed surgically, and to band the pulmonary artery the following week. He was four weeks to the day when I carried him to the theatre for his operation, and I did then, as I have done on subsequent operations since, dreaded loathed and felt physically sick at the 'red line', that awful place where we all have to hand over our loved ones. I seriously thought that I would never see him alive again.

The operation went well and the surgeon came to tell me that they had closed the ductus but had not banded the pulmonary artery, as they had found a muscle growing at its entrance and this was keeping the pressures at a reasonable level, but they would have to keep an eye on it as they did not know at what rate it may grow.

He was fit enough to leave the unit when he vas seven weeks old. Within weeks he was in cardiac failure and was admitted to the general hospital in Yeovil, Somerset, this was controlled by increasing his diuretics. He came home after a few days, but it was not long before he was in failure again. This was to be the pattern of our lives over the next two years, especially during the winter, although after a while we came to recognise the symptoms and were able to deal with it, with the help of our excellent GP practice at home.

As he grew, he did not seem to develop as his brothers had and when he was eighteen months old he went to a pre-school opportunity group in Yeovil, Somerset, for children with special needs, for a couple of mornings a week.

We were due to go to a cardiac clinic at Yeovil Hospital in October 1987, but it was brought forward to September because his consultant cardiologist was leaving the Southampton unit to undertake a research post in Holland. I got an attack of anxiety, it was like losing a trusted and long time friend. That may seem a funny thing to say about a consultant, but I think that you build up a rapport and trust in those your child sees on a regular basis. To add to this, I found out that the surgeon who had first operated on Craig had also left the unit to move to London and there was a new person in this post.

Then in November 1987, when he was just two years old, the helpers at the playgroup confirmed what I had thought, that he was becoming more breathless and tired, so I asked his paediatrician for an appointment. He told me after that meeting that he wanted to have a word with Southampton and he would telephone me later that afternoon. His call came with the instruction that I was to take Craig to the Southampton unit the next day for a cardiac catheter. The catheter showed that a shunt was needed, but he came out of the anaesthetic having what they thought was a respiratory attack and ended up in intensive care. This led to the anaesthetist delaying his operation for the shunt, as he thought Craig may have a condition that, after anaesthetics, could result in him having extremely high temperatures, the muscles contracting unceasingly, resulting in his death (malignant hyperpyrexia). A solution was found by mixing different anaesthetics and relaxants.

Some two or three weeks later, it was decided to undertake the full corrections of his heart, a Fontan Procedure, this would bring this operation some two years prior to the time it would ideally be done. The night before, as I signed his consent form, I felt dreadful, it was like signing a death warrant; as I watched him sleeping in his cot, I reached in and held his hand, and cried, and cried, and cried. By now, Craig could only walk with the aid of a walker. He could not crawl, talk or eat food that was not pureéd, nor was he toilet trained, but we loved him so much and could not imagine how life would be without him.

7 December 1987, 8.30 am. I had bathed and cuddled Craig, the pre-med had been given and we were on our way to the dreadful red line. I can't remember what Pete, my husband, and I did to fill in the time until we saw him again, but at about 2.30 pm. we got the call that he was in intensive care and that we could see him. I felt hot and faint within seconds of reaching his bed, the relief of seeing him, the lack of sleep the previous night and the heat in that room made me feel this way. We left there after a while with the feeling of guilt for being unable to face it for any great length of time, and of being inept, so unable to help him when he looked so helpless and vulnerable.

He did really well and was back on E1 within 48 hours. The next two weeks did not go quite so well and on Christmas Eve he was taken back to theatre as an emergency. During the operation his cardiologist came to see Pete and me, he told us that they had to revive Craig twice on the table, that things did not seem so good and that we had to prepare for the worst. It was uncanny, but that was the first time throughout that I had seen Pete cry, suddenly I had to be strong for him instead of the other way around. It was another lifetime, although it was in reality two hours before we had the message from intensive care that he was there. We went to see him and his surgeon told us what had happened, that they were having a problem keeping his blood pressure up. He had drips, tubes and drains everywhere, but he was alive.

Christmas Day was spent on E1 with our other two boys, mainly because I would not leave the hospital, but the doctors and staff were lovely. There were four children in intensive care, each at varying degrees of recovery, but none on the ward, so our two sons (aged 3 years and 5 years old) opening their presents were the star attraction. The warmth from everyone that day was so genuine and lovely, even the surgeons came in for a visit on other than just a professional basis.

Two days later I was woken from my bed on E1 by the sister from intensive care at 6.45 am. She came to tell me that they were losing Craig again and that they had called for his surgeon. He came, put in another chest drain in the other lung and had him cooled down to 28 degrees, rectally. His kidneys, liver and heart were all giving out, cooling him would have slowed everything down and give them time, maybe, to mend.

He lay for five days, cold and lifeless, having been sedated. Then they started to bring the body temperature up, very slowly, one degree every six hours and we all hoped that it had worked. He seemed to have responded well, but he was still draining 2 litres of fluid a day from each lung, and was needing extra blood every two days because of his blood pressure. He eventually left intensive care, after several attempts to get him off the ventilator, on the 27 January 1988, after just over a month there. One week later I took him home after ten weeks in hospital; it was his eldest brothers sixth birthday, 2 February 1988.

We had to return to the unit for check ups every week. He was admitted again in March for a fortnight, after having another chest drain put in and coming around from the anaesthetic having fits. He had an overnight stay again in April and was admitted again in June for a week. It was at this point that his cardiologist decided to reduce the very high drug doses that Craig was taking because he had been retaining fluids. It was a last resort, if this did not work there was nothing else that could be done for him and was unlikely, because of his problems, that he would be considered for a heart transplant. After a week of reducing the drugs, I was elated to say the least, that he was better than I had seen him for a very long time.

Now, two years later, he is well cardiac-wise, but we are still unable to get him off his drugs completely. He is considered to be severely physically and mentally handicapped, not even being able to walk in a walker anymore and is epileptic. The prospects for his future are unknown, as any child, but it is harder for me to consider his in the same way as his brothers and sometimes I find this very hard. I cannot envisage life in ten, twenty or even thirty years time with Craig as he is - a very loving, happy, trusting, cuddly boy with everyone, but could he have the same appeal to others when he's ten, fifteen or twenty, even though, mentally, he will still want to have?

I found that during my times in and out of Ocean Ward (E1) with Craig, that the friends I have made have been of great importance to me, some of whom I only write to yearly now, at Christmas, and it is their help I look for when I am down and it is never refused, that shoulder to cry on. As a founder member of our Circle I hope that we can provide such a shoulder to anyone who may feel the need. Those who join have been, or are going through the different stages of traumas that our children bring, unintentionally, when they are born with a problem.

This story is a tribute to the surgeons, doctors and staff of the Wessex Cardiothoracic Unit, our general practicioner, his colleagues and surgery, the doctors and staff of Ward 10, Yeovil District Hospital, with our most grateful thanks.

Peter, Angela, Paul, Wayne and Craig Coxon

January 1998 - quick update as nearly ten years have passed since this was first written. Since this story was first printed in our Circle's Newsletter some time in 1988, Craig has continued to grow in size, and his heart remains remarkably stable, despite the fact that because of his condition and related complications, he is not expected to grow into adulthood. However, he has been diagnosed as brain damaged with brain stem atrophy. This has led to partial and sub clinical fits, and he is totally dependant upon us for his care. He cannot eat foods that are not pureéd and has to be spoon fed, he does not talk, crawl, walk or sit unaided, and does not stand unless he is in specialised equipment with splints, he is doubly incontinent and no longer wheels his own wheelchair.

We also attend the Children's Southwest Hospice at Barnstaple, as a family, for support and respite. His drug regime is extremely high in trying to control his fits, in fact every time he has the blood levels done to see how they are doing, the haematologists flip. Apparently he is toxic and they are not sure how this will affect him medically long term, but we are not worried about this, as long term is not our worry, but keeping him comfortable and happy now is. However, it is his fits that have led to his deterioration of abilities and progression, and we can see no way forward to aid progression, other than an operation to try to obliterate the fits, but we know that the anaesthetic alone could kill him, let alone any invasion of his brain, so it is not an option.

Those were the negatives, on a positive note, Craig is still a very happy, sociable, cuddly, trusting and loving boy. Although at twelve years of age he is of normal size and six stones of dead weight to lift and manoeuvre about, (my aching back!) he can make his feelings known all too well by his facial expressions with the looks he gives; he can twist all of us around his little finger while he doesn't even lift one! There are times when we have to watch what we are saying as he understands more than we realise, and he lets us know, and times when we have to hide our faces as we struggle to smother laughter at some facial expression he has made. He has very limited Makaton sign language, but he can really nag in them!

All in all, Craig was my inspiration for the formation of our Circle, that and the real need for some sort of parental support group stemming from the Southampton Unit. In the ten years that I have been working for our Circle, I have always had, and relied upon, the patience and backing of Pete and our two sons, Paul and Wayne, and they have never denied me this, and I am very grateful for this.

Being on the executive committee for the past ten years has not all been easy, or fun, but two things I am sure of, it has been hard work and rewarding all at the same time. And although I can get quite stressed at times, especially when I get behind with the workload, I also find it to have a therapeutic effect. I think I must be abnormal or something!

So I am indebted to the whole of my family for their support, and that includes my extended family, like Craig's grandparents, thank you seems a little weak, but it's all I have to offer, I'm afraid. So a very, very big thank you to you all.

Angela,
Mother, Wife, and WCHC founder (but not always in that order at all times)