It's Only Words

ROBERT

1. The Way We Were.

2. In The Beginning.

3. Revelations.

4. Counting Out Time.

5. Look Back In Anguish.

6. A Not So Happy Ending.

7. It’s Only Words.

8. Big Brother Robert.

The Way We Were.

The death of children was not a new experience for us. Both Anna and myself work in a residential hospital for physically handicapped children, some of whom suffer with terminal conditions, and others for whom sudden death, for various reasons linked to their conditions, is always a strong possibility. It is always a sad and depressing time for the staff when a child we care for dies, and in the following days the usual rituals are performed. At some time over the following days, the parents and relatives will visit the ward, genuin¬ely filled with gratitude for the way that we cared for their child over the last years.

And on the day of the funeral, the parents appear to be towers of strength, more often than not offering comfort and support to family and friends at a time when they need the help most themselves. It always amazed us at how the parents coped so well, as it seemed, after having just a few short days to take in what has happened to them, and then to make all the arrangements and notify everyone who needs to be told. Each time we tried to imagine how the parents really felt, but now we know, with more certainty, that there is only one way to know how it really feels when your child dies.

Bouts of depression are common at work in the weeks following the death of one of our young patients. The natural order of life is totally shattered, and many staff suffer with feelings of extreme guilt. How could this happen? Why couldn’t we do anything to prevent the child’s death? For myself, I often feel very guilty about the way that I earn my living. It is so hard to link together the act of watching a child die, and then getting paid a salary at the end of the month.

The most obvious way that we could help parents would be to put them in touch with The Compassionate Friends, but, I admit with great shame, as professional carers we knew nothing of the organisation and the help and supp¬ort that is offered. Like many hospitals, ours does not want to contemplate or accept failure, and the death of a child must be seen as the ultimate fail¬ure for the staff. It is so much easier to pretend that it is not going to happen again and not be prepared. Hopefully, in time, especially now that social attitudes are changing, helpful advice and support will be given to parents when it is needed. From day one.

Working where we do highlighted all the problems which could be caused before and during birth. We started our family just when we felt that the time was right for us. The fears of possible mis-haps followed us all the way through the first pregnancy, but Matthew, our eldest, was born in April 1987, and in spite of a few mistakes, was perfectly healthy and normal. At last we had changed from a couple to a family.

Over the next two years we did all the usual things that a family does. Going on holidays, to the parks and making friends with other young parents. Watching and playing eagerly as Matthew changed from a baby to a toddler. Visits to the soft room and the gym and toddler group became our regular way of life. We always work on opposite shifts so that either mummy or daddy were always at home. And on Matthew’s second birthday, we put his name down for nursery school. This simple act started off a train of thought that was going to change our way of life.

We had never really discussed it before, but neither of us really expec¬ted Matthew to be an only child. And when he was two years old, he suddenly seemed to be so grown up. This was the time when we decided that a baby brother or sister would be a good idea. Timing would be essential to us, as we always wanted our children to be born in the Spring so that they were as big and strong as possible when they went into their first Winter. It would also give us a three year age gap between our children, which, friends assured us, was a reasonable gap where the children could still grow together and be good comp¬anions and friends. From a woman’s point of view, we believe that it is easier to be pregnant through the Autumn and Winter and not have to carry a large bump around through the sometimes scorching hot days of an English Summer.

Colleagues at work laughed when I predicted the time and date of the birth of our second child when Anna was just a few weeks pregnant. Looking through the diary for the following year, the date was chosen as the most convenient day for us, as it would tie in with my off duty rota and annual leave very well.

From the outset we were concerned that sibling jealousy could cause a problem, so we did all that we could to include Matthew in the pregnancy. The emphasis was always on it being his baby brother or sister, and on how lucky he would be to have a baby to play with and help look after, and even to share a room with. No—one looked forward to the birth more than Matthew, so it seemed that our brand of psychology worked.

We had one scare during the pregnancy, which at the time, was the worst ten minutes of our lives. After being delayed in the waiting room for a routine scan, it was a great relief for Anna, bladder full to bursting, to finally arrive in the scanning room. The operator produced a marvelous image of our baby on the screen, but seemed a little unsure of herself. After a few minutes she apologised that she couldn’t quite make out the chambers of the heart and went out to fetch a more senior colleague to help with the scan. Any mention of the heart can and did send us into a complete panic. Having had such a beau¬tiful, perfect first child it was hard to contemplate any kind of imperfection in our next baby.

An eternity passed before the girl returned with her colleague, who had been briefed on the possible problem with the scan. After a quick look at the screen she adjusted the controls and darkened the image considerably, looked again and declared that all was normal. It was from this darkened image that our scan photos were produced. It was so much harder to make out the image on these darkened pictures, but we were so relieved that everything was normal that we didn’t really mind. Now that we knew that all was well and that the development was normal, we could go home and happily pass the time, through Christmas and then on to the birth of our second baby.

In The Beginning.

From previous experience, we already knew why our local maternity unit had such a well deserved bad reputation. Several mistakes had been made when Matthew was born, causing a great deal of suffering to Anna and much anguish to myself for having to watch her suffer. Eventually though, we were so grateful to leave with a normal healthy baby boy, plus the usual infection, that we didn’t bother to complain. Besides, it wouldn’t have seemed to be the right thing to do. After all, we did all work for the same firm.

This time though it was going to be different. We were not first time parents and we had learned so much over the previous three years, especially about the D.O.M.I.N.O. scheme where you have the same midwife before, during and after the birth. Although we had no faith in our local maternity unit, the idea of having our own personal midwife and using their facilities was very attractive to us. The idea of a home birth never appealed to us as we always wanted to be close to all the emergency equipment normally found in hospital should it ever have been needed.

We considered ourselves very lucky indeed to have Christine as our mid¬wife, thought by many (especially the mums and dads) to be the best in town. And on the day predicted more than seven months previously, Anna went into labour. It took several calls to the maternity unit before the message was finally passed on to Christine, who then arrived for the first of many visits during the day to follow the progress. When the pain became too great for Anna to bear, we all went up to the delivery suite for the remaining time.

Christine’s idea that a baby will be born when it is ready and that you don’t have to give birth by numbers made us feel a lot more at ease. Giving Anna half a dose of pethedine to ease the pain but still leaving her able to enjoy the birth made so much sense, as did placing a mirror so that she could watch her baby being born. When she was nearly ready to finish work, Christine decided to have a light supper and then deliver our baby, which is exactly what she did. After a quick salad she gowned up and delivered our second son, Robert, who at 7lb 15oz seemed massive as we are both of fairly small build. By the time we were ready to go home the next day, Robert had already picked up the usual eye infection, easily treatable, but not so good for the for the first set of photographs. It was to take us a long time to realise that before we came home that Robert was never once listened to with a stethoscope.

Over the following days came a steady stream of family and friends to admire the new arrival, making sure that they also acknowledged Matthew, again to help quell any sibling jealousy. It worked very well. Matthew worshipped his baby brother and always wanted to help and do everything for him. He always spoke to Robert as if he understood what was being said. One of Anna’s favorite memories from home is of Matthew pushing Robert around the room in his baby bouncer and then into the play house so that they could both hide from mummy together.

It was through Matthew that Robert inherited Jan, the kind of health visitor that every family should have. Not just a mother but a working mother who knows just what life is all about. If you have a problem, she has already known it. Had any kind of fear? She’s already had it. A well balanced mixture of professionalism, know how, common sense and experience. Just how much experience we would discover in the weeks to come. We had known Jan for nearly three years by this time. She was our health visitor, our advisor, but most of all she was our friend. After hearing stories from other parents not in our practice, we felt privileged to have someone like Jan having the care of our baby on her caseload.

From the moment that Robert was born we couldn’t imagine life without him. It seemed so natural that we should have two such perfect, beautiful boys. And of course, we were so very proud. All parents must think that their babies are perfect, and quite rightly so, but ours really were. Not a mark or blemish on them anywhere. Nine days before Robert was born, Anna’s sister had given birth to her second child, who after having a very traumatic birth looked very small and fragile. Not that it makes much difference in the end, as that tiny baby has now grown into a two year old, big eyed cherub.

Using up the last of my annual leave meant that for a few weeks I only had to work for two days a week giving me a great deal of time to spend with the family. Much of this time was spent taking Matthew out to his usual weekly activities and on special outings so that Anna had a fair amount of time for bonding with Robert without Matthew feeling left out, which he didn’t as he was getting so much attention from his daddy. At other times though we all went out together so that Robert could watch Matthew in his gym class or at his playgroup. As big brother, Matthew was so proud to skew the baby off, and show off to him, and to tell him about our way of life and where we liked to go. Robert responded very well to Matthew, and everything seemed so perfect. It didn’t take long to realise that we now had the perfect family.

Being sick is perfectly normal for babies, so when Robert was sick from time to time we weren’t unduly bothered. Matthew had never been sick as a baby so we didn’t really know what the pattern, if any, should be. All we knew was that some babies were sick and some were not. Naturally we assumed that this time we were going to have a sickly baby, just a little extra washing, nothing more.

At about three weeks old, when the vomiting became more regular, the thought first crossed our minds that something may not be quite right. Although neither of us had worked with babies, we have a good selection of medical text books, and many hours of study led us to the possibility of pyloric stenosis — thickening of the pyloric sphincter.

This of course explained everything that we have learned since. The increased nitrogen levels, and therefore decreased oxygen would account for the increased respiration rate. Didn’t all babies breathe a little on the fast side anyway? Perhaps though, he did breathe a little too fast. Yes, he took a long time over his feeds. And the vomiting, possibly caused by the stomach rejecting the food would naturally explain the slow weight gain. Reading up on the surgical technique for correcting pyloric stenosis left us devastated. The mere thought that our beautiful baby boy might need an oper¬ation led us close to hysteria. We didn’t yet know how wrong we were, or how lucky we would have been if our diagnosis had been correct.

Jan had been following his weight but didn’t find any real cause for concern until he was about three and a half weeks old. But to be sure, she would come back after the weekend to see how we were doing. At twenty eight days, Jan came back to check his weight gain over the weekend. This was to be her last home visit to Robert, and though nothing was said, any Health Visitor who can take a sideways glance at a baby in his daddy’s arms and come up with a correct diagnosis is either a lucky guesser or absolutely brilliant at their job, and we already knew how we felt about the abilities of Jan. To complete her check up, she needed to pop up to the surgery, just around the corner from our house, to borrow a stethoscope. It was time to get a second opinion, and pass the buck. That was the last we were to see of Jan that day.

In the time that it took us to make a cup of tea, Jan had returned to the practice and sent out a G.P. who arrived with the knowledge that we did not yet have. His examination was fast but thorough. We were a bit disturbed at first as we thought that he was just a locum for our regular doctor who was away at the time. As it turned out, he was not only a member of the same group from a different surgery, but one of the most highly qualified and experienced general practitioners in our district. All we knew at the time though was that he was one of the most straightforward and honest doctors that we would ever meet.

We were silently asking ourselves, and each other, why he wasn’t look¬ing at the stomach during the examination. And why was he paying so much attention to the chest? The penny was beginning to drop at last. It took just a few minutes to telephone our local children’s hospital and write a letter of referral. His honesty came to the fore when Anna asked him what was wrong with our little boy. Without being evasive, as many who followed have been, he shattered our whole world with one very simple and direct statement— I think that your baby has a hole in the heart”.

Revelations.

Having quickly found a baby sitter for Matthew, we soon found our¬selves at the outpatient’s department handing over the letter of referral. Far from what we expected, we were shown to a seat in the waiting room. And after a while, to another seat in yet another waiting area. All we could think of was our little boy with a poorly heart, and wonder why we didn’t get to see a doctor straight away. There were other children around to be seen, but they mostly were cuts and bruises and not life threatening. Surely there was someone who could have been called, but no, we waited and waited until we finally were put into a cubicle. The waiting doesn’t end here though. A friendly, bubbly nurse pokes her head round the curtains every couple of minutes to say that the doctor, who is busily working her way through the cubicles, will be with you shortly.

As your turn approaches, a staff nurse takes a look to make a spot diagnosis. She observed us for a while, disappeared and was heard to say that this one looked fine; we were probably just a couple of time wasters. With all of the anger and pain of the past two years, and the many thought¬less and insensitive remarks we have had to endure, hers was the only one which nearly provoked me to violence, which is totally out of character for me. Even now, I sometimes wish that I had given her a slap, from a time waster to one who should learn to lower their voice.

At last, we were seen by a doctor, who having read the letter from the G.P. looked at Robert, appearing as he always did to be the picture of good health, yet she seemed unconvinced that there could be any major problem with him. Suspecting a possible mild chest infection, she then dispatched us to the x—ray department on our way up to the ward to be admitted for observa¬tion for the night. So after a few hours we had arrived on the special care unit where we hoped to get some of the answers that we were looking for.

For the first time we crossed over the barrier from being nursing staff to parents of a patient. It seemed very strange indeed to hand over the care of our baby to nurses some of whom we had training alongside us at work. But then knowing some of the staff helped to pass the time and probably made sure that we got more than our fair share of attention. Not every patient has a senior nursing officer to escort them to radiology, neither do they get extra visits from physiotherapists, play therapists, sisters and charge nurses.

Although it was explained to us that heart failure is not as bad as it sounds, seeing our little boy from the outside of an oxygen hood brought home to us just how sick he really was. Very soon we were introduced to the tests which would become our way of life for the months to come. Blood tests, ECG’s, oxygen levels, ECHOE’s, respiration rates, all so new. So soon to become so familiar. Giving bad news to parents is not an easy task at any time. Being guarded, the doctor, who we also new from work, would only give us a list of possibilities at the end of the first day. That night, the medical text books came out once again. Checking the symptoms against what we had already learned brought us to the final conclusion. It would be another twenty four hours before we would be told officially, but we already had the answer. Our little Robert had an AVSD. We were now the parents of a heart baby.

The plans for correctional treatment are pretty straightforward. Go home, grow a bit more and then return in a few months time for the necessary surgery. But first, we would have to go to Guy’s Hospital in London so that Robert could be assessed and stabilised medically. A bed would be available in four days, so it was just a question of waiting. Having said goodbye to so many children over the years, we now found ourselves in a position where we might have to do the same to our own child. Trying to prepare ourselves, we asked all the questions that are difficult to answer. On asking what the chances of survival were, we were told that it is impossible to quote figures on such matters. It must be hard for doctors who face such blunt questions from parents, but we believe now, as we did at the time, that the truth should be told if the parents want to know.

One of the first things to sort out was work. Anna had moved in to a visitor’s room on the day that Robert was admitted to hospital, so I needed to be at home for Matthew. After briefly explaining the situation to my line manager, I found myself being put on one week’s compassionate leave, usually only given for a death in the immediate family, but extendable at management’s discression. We found this a very touching and welcome gesture at a time when we were still adjusting to our situation. The following week my G.P. would sign me off sick with general debility, an acceptable phrase for sickness purposes without having to have any record of mental instability on the card. Not having to return to work, and immediate financial help from Anna’s mother meant that we had nothing to worry about other than our little boy and his eventual recovery.

On the first evening in hospital, I came home to find one of the nurses from work had called in to see how we were, and to offer any help she could. It was an offer which we would take up in the weeks, and then the months to come. When things were bad, it helped to know that there was someone there who would listen, even though all we had to say was totally depressing. In fact, we would not have survived the past years without her and the family who looked after us during the worst of the bad times. It was she who finally found a leaflet which led us to become Compassionate Friends.

Others though, were not so understanding. Once the news had traveled around, we found ourselves in a similar situation to the newly bereaved. The ‘phone becomes suddenly silent and the doorbell stops ringing. Of course there were some visitors and callers, but noticeably fewer than normal. Through the days Matthew and I could go up and see them both, but at night when Matthew was asleep, it was very lonely. We had been apart before, usually when I had taken children from work away on holiday, but never because one of our own children was seriously ill. We were warned, through literature, that a type of grieving starts from the time of diagnosis. Gone is the happy, healthy, normal baby that we once had, the baby for which we grieve. Then the time for accepting a totally new, seriously ill baby in his place.

Optimism was everywhere. Everyone knew someone with a hole in the heart who was still running around thirty years later, and of course technology has come along so much more since those days. So many people had the attitude that there was nothing to worry over that it began to hurt us deeply. People always mean well when they say these things, but making light of our problems wasn’t going to make them any less frightening, or life threatening. In the months following Robert’s death, we were surprised to learn how many people we knew who had a similar experience in the past. So many tragic, desperate tales. So many children who died. Looking back, and that is all that we can do now, we would have felt so much less cheated by fate if just one person had told us their tragic story when Robert was still alive.

On the day before the transfer to London, some friends took Matthew home to tea so that Anna and I could spend time together and with Robert. It was strange for her to leave the hospital to grab a quick hamburger in town. Just as it was hard to imagine life without him before he was born, it was now getting hard to think that hospitals were a normal part of life. It is strange how quickly we have to adjust to new situations in life, and in death. Although we accepted and fully understood the seriousness of Robert’s illness, we also had to share in the general feeling of optimism. For the first four days that he was in hospital we didn’t take a single photograph. Anna was so distressed at the sight of him peering through the side of his oxygen hood that she did not want to have any pictoral reminders, and besides, we could always make up the number of photos when he got better.

The next day, Anna’s birthday, she would travel up to Guy’s with him in the ambulance. Matthew and I would follow on later in the car. A junior doctor was also going as an escort. He thought himself so lucky as he hadn’t seen a baby with this condition before. But with Matthew at home with a baby¬sitter, we still had a couple of hours left of the evening to spend with our baby, and each other as we looked forward, with much anxiety, to the next stage in the complete recovery of our precious heart baby.

Counting Out Time

Turning up in the early afternoon, nobody had warned me just how big Guy’s Hospital was. Half an hour of searching and following directions, even¬tually led us to Rothschild, and the family reunion. Because the ward specialised in heart children, it was so different from what we had grown used to over the past few days. It very soon became apparent that all of the staff knew exactly what they were doing, the nurses skillfully handling parents who were still in a state of shock from the recent diagnosis. Blood tests were so much easier, whisked away for a sample and brought back in a couple of minutes by a young doctor (never did catch his name) who appeared to be the specialist for cuddles.

One of the most striking things was the complete family atmosphere that surrounded the ward. There were other children, and their parents, all of whom shared the same fears and anxieties, to get to know. The nursing and medical staff soon came across more as individuals in their own right rather than just uniformed professionals. With all the children to care for, and the machinery to operate and observe, they still found the time to make sure that the parents were coping as well.

One of Anna’s friends had talked her parents into letting Matthew and I have the spare room at their house a few miles down the river. This arrange¬ment was to last just twenty four hours. It became obvious on our first full day that commuting to the City with a small child in a pushchair was not a very good idea. Our minds were made up when we were told that Matthew was causing a lot of inconvenience to the dog, who had to be kept shut away as he sometimes got very over excited with children. This was to be our first major learning experience in our new situation. Some people’s understanding and compassion do not extend very far. Some people will do anything possible to help, so long as it doesn’t inconvenience their dog. We were deeply shocked by this attitude, but little did we know how much more we had to learn.

About a week after the original diagnosis, when we were beginning to accept our situation, it occurred to us that money might be able to buy better treatment than we were being offered. ( Neither of us agree with the principles of private medicine, but this was our baby, and nothing but the best would be good enough). Anyway, enquiries were made, money no object, ( naturally, if going private could help then we would have sold our house to save our boy). The answers all came back the same. The children’s cardiac unit at Guy’s was the best that we could possibly hope for, so there we stayed as N.H.S. patient, and parents, and we kept the house at the same time.

Having moved back home just one day after traveling to London, it was decided that Matthew and I should visit every second day, leaving some time at home to take him to the gym class and playgroup. Of all the time that Robert was to spend in hospital, this was to be the loneliest of all for me. Matthew was bright enough to know that something was seriously wrong, and all the way through we were totally honest with him. Disturbed, fitful sleep became the norm for both of us, and tiredness just another fact of life. When taking Matthew out to his usual haunts, the wall of silence encountered led me to a greater understanding of the words of Quentin Crisp. Never speaking to any¬one unless they spoke first. Never looking directly at anyone unless they demanded that we do so. It started to feel as if somehow it was all our fault. Or perhaps we had some terrible disease which could be caught if somebody even dared to speak to us. We knew that this was totally ridiculous, but that is how it felt at the time.

The traveling up to Guy’s seemed to last for an eternity, though it was only for twelve days during our first visit. The good news was that Robert had been stabilised and could now go home for a few months to grow to a more reasonable size before he had his operation. First though, he would be sent back to our local hospital for a few days of observation, after which he could come home. Once the transfer was complete, and Robert had settled down for the night, Anna packed her bags and came home to stay. Matthew had been without his mummy for too long. And anyway, by the end of the week Robert would be back at home and we would be a complete family once again. This was when Anna had to stop feeding Robert. Over the past couple of weeks she had been expressing milk to give the exact amount he needed for his feeds and drugs, but being away from the ward made it too difficult to express enough milk, so she decided to stop and he went onto bottled milk. I suppose that only another woman in the same situation can really understand how it feels to have to stop feeding a baby, but we accepted it as a necessary sacrifice on the way to our boy making his recovery.

What had started out as a two or three day stay in our local hospital eventually turned out to be sixteen days. Of course, it was convenient having the hospital almost in sight of the end of our street, and we could all easily go and see Robert every day. Things were looking much brighter as we were not getting so tired with all the traveling, and besides, Robert would be coming home to stay in the next few days. As his feeds would need to be carefully measured I went to Boots to buy a few bottles and a sterilizing tank. Proudly, they sat on the side in the kitchen waiting for him to come home. At this time we didn’t know that he would never come home, and never get to use the nice new bottles. Since that preparatory shopping trip, I have since learned that it is never a good idea to tempt fate.

The first few days back at home weren’t too bad. Robert was taking to the increase in his feeds very well, and he was being sick much less than he had been before he was stabilized. Then one evening, when his intake had been increased to 9Omls per feed, he was sick once soon after and somebody decided to lower his feeds drastically. It was a disappointment, but we had no reason to doubt the decisions of others who must have known more than us. When what should have been a few days turned into the first week, it occurred to us that all was not as it should be. Robert’s feeds and drugs had all been altered and the improvements seen in London were becoming a little more elusive. We supposed that it would just take a little more time until the right balance could be found to keep his heart failure under control and allow for a healthy daily increase in weight. In the meantime, we took it in turns to go and visit him at all sorts of times, day and night, any time that we wanted to go and see him really. We made sure that Matthew got to see his baby brother as much as he wanted to. He was so proud to be able to help more now that Robert was bottle feeding. The sight of Matthew giving Robert a feed made us fairly certain that all of this was going to create a bond between the boys that could never be broken.

As Robert was going to be coming home to sleep, my attention turned to the damp penetration which had been attacking our chimney breast. It would need sorting out fairly promptly if Robert was going to sleep in our room. As I have a considerable fear of heights, I approached a friend who dabbled in building and decorating to help me out. This job had to be done effectively if it was going to help protect the health of my baby, and calling someone from the yellow pages can be a bit of a lottery. Who better then than a mate who loves children and would certainly do anything to help protect a child. The date was fixed and the materials purchased. The ladders were borrowed from friends down the road. The day came and went, and the work was left undone. After waiting a couple of weeks I had to overcome my fear of heights and found myself on the roof executing building work never before attempted. My fear of falling from the roof was exceeded by the fear of Robert coming home and catching a chest infection from the penetrating damp. Months after Robert had died, my friend came round to say how sorry he was that he never turned up but he had been busy watching the Grand National. As it turned out, mending the damp areas on the roof would make no difference to Robert’s health. But I was so disgusted that a horse race could be considered so much more important than trying to improve conditions for when Robert came home. He lost more than a few quid on the Grand National of 1990. Nothing he could have done could have saved Robert, but I can never forgive the attitude that a flutter on the horses is more important than trying to do something that might have helped. A few months later he came back to tell me that I have an attitude problem. After what we had been through I should hope that I did. My son was dead, and he couldn’t see why I just couldn’t shrug it off as one of those things. A man I had known for more than a decade, who I thought had a total love of children could show such an uncaring side to his nature. Who, I often ask myself has the real attitude problem.

At about half way through our second week back at home, we both secretly started to wish that Robert was back in Guy’s hospital. The previous days had brought nothing but disappointments. His weight was starting to go down rather than up, and after he had vomited after a bottle feed, somebody made the decision to put him onto a naso-gastric tube feeding regime. This action did not stop the vomiting after his feeds, and we were concerned that his drugs were not being replaced when he brought them back up. But who were we to tell the nurses what to do. They were far more used to treating this sort of patient than we were. These were, of course, just nagging little doubts. The staff were all very kind and did their best for Robert, though looking back, we knew deep down that they just didn’t have the experience that we had grow accustomed to in London, which is why we longed to be back on Rothschild, regard¬less of the added inconvenience of extra traveling.

The weekend before Matthew’s third birthday saw a visit from Anna’s Mother, sister and her family. It was the nearest we could get to arranging a birthday tea where we could all get together. Most of the events of that day have since been lost from my memory, but I do remember taking Anna’s sister, and later on her mother up to the hospital to see Robert. It would have been such a waste for them to have driven over forty miles to see us and not fit in a visit to Robert just five minutes along the road. I do not know if people develop some kind of deeper knowledge, or sixth sense, as they get older, but there was something in the tone of my mother in law’s voice that suggested that she knew that this was to be the last time that she said good¬bye to her little Robert, her youngest grandson. It was a very moving scene, of which I was the only witness. The memory of that last goodbye haunts me now, and will continue to do so as long as I have the ability to remember.

The longing to return to London stayed with us. This was no slight on the abilities of the staff, but Robert’s condition was unusual in our small provincial hospital, and it was just natural to want to be where the staff were more experienced in these cases. Just a few hours before the time we had chosen to ask for a transfer back to London, one of the senior doctors came into the room for a little chat. Apart from the suffering and unpleasantness that our children have to endure before they can be made better, the most pitiful sight that I have ever witnessed was that doctor, leaning against Robert’s cot, searching for an easy way to tell this anxious parent that he was out of ideas and did not know what else to do. This must have been a terrible admission for a doctor, who may well see it as a sign of his own failure. But not so! He was a good all round paediatric doctor, lacking only in the experience to be found at specialist cardiac units. Even so, he still managed to do the best thing for his patient, and the next day, (Matthew’s birthday this time), we would be sent back to Guy’s hospital. Rising early the next morning allowed a little time with Matthew when he opened his birthday presents, before walking up to the local hospital to take Robert on what was to be the last journey of his life. With a student nurse as an escort and my son cradled into my arms, I settled down to the journey that would take him away from his home town for the very last time.

Somebody, somewhere at Guy’s must have been expecting us, but we seemed to have completely surprised the nursing staff on the ward. However, we were very soon made quite welcome, (Robert always was one of their favorites), and settled back in to the normal routine. It was several hours before we saw any of the medical staff, and their conclusion was that we should carry on as before, taking one day at a time and see how things progressed.

It was on this first day back at Guy’s that we first met the Johnsons, who, within a few short weeks, would prove themselves to be the best friends that we would ever have, and their son, Joseph, who would soon become Robert’s best friend and closest companion. Phil Johnson was a redundant mining engineer, whose past work experience made it easy for him to understand and translate the workings of the heart into simple language. Being from the same part of Wales as my own family, he also liked to talk a lot, which made him an easy chap to get to know. Caroline, his wife, stayed for the first couple of days and then returned to Wales to look after their other children, and drive back up to London with the family in tow whenever possible.

Joseph, who eventually had his operation two weeks after Robert, was first admitted with what was considered to be a minor heart complaint. After several weeks of investigations and a cancellation of his first operation date, it eventually transpired that he was suffering from several different major disorders, and his chances of survival were considered to be very slim. Two years on, it gives us great joy to see Joseph growing up to be a normal happy and relatively healthy boy. Being just two weeks older than Robert, he is a much loved reminder (by us as well as his own family), of how our own boy would have developed had he survived.

The next three weeks were all pretty much the same. Anna and I took it in turns to travel to London during the week, leaving Saturday free so that Matthew could spend some time with his mummy and daddy together. On Sundays, we all drove up in the car as the roads were mostly empty and parking was easier. After saying a quick hello to Robert, Matthew was usually more inter¬ested in playing with the wonderful toys on the ward, but at least we were able to spend part of one day together as a complete family, even if the surroundings were a little unnatural.

The juggling with drugs and feeds continued until the right balance was found, and although he was still being sick at times, Robert started to put on the target weight of one ounce per day on average. What we did not know at the time, despite the good weight gain, was that the heart failure was still not quite under control. However, we were given the distinct impression that Robert would be staying at Guy’s until he was ready for his operation. Just as we had learned to cope with being the parents of a heart baby, so we now had to accept that Robert would be away from home for quite some time to come. It didn’t really matter at the time, because after he had been cured, he would be coming home to us forever. His first few months would eventually become a forgotten nightmare and we would have the rest of our lives to love him, watch him grow and make us as proud of him as we are of Matthew.

We have learned many things through our experiences; new levels of tolerance and understanding, and a deeper knowledge of the true value of life. We also learned many practical skills from the nursing staff, such as how to connect up and read specialised monitoring equipment. Whilst being taught how to pass a naso—gastric tube, I wondered what would happen if my own nursing staff from work could see me now. Having been out of general nursing for years, most of them would have been terrified of trying to put a little plastic tube up a baby’s nose. Reading the tabloid cut out on the wall showing the effects of financial cuts to the children’s cardiac service led me to consider the significance of my own job. The once world famous hospital at which I worked had now become a bed and breakfast accommodation for the school that was originally only attached to the hospital for the purpose of meeting the legal requirements regarding state education for children. Without wish¬ing to talk myself into redundancy, I found it more difficult to accept that money should be poured into our place of work when so many other essential services were being drastically cut. We both firmly believe that all areas of the NHS are worthy of finance, but in the days of ever increasing under— funding, some areas are more worthy than others. Our son is dead, but we were, and still are grateful that he at least had a chance. There have been so many stories of babies sent home to die because there wasn’t the money to pay for their treatment, we were just glad that our Robert wasn’t one of them.

Being under the impression that the waiting would continue for two or three months to come, I decided that it was time to have myself signed fit for duty. Holiday entitlement would allow me to work two long shifts over the weekends, leaving the rest of the week free for traveling back and forth to London. The day after reporting fit for duty, we learned that Robert’s operat¬ion would be on the following Tuesday. The medical team decided that there could be no advantage in waiting any longer, so at last we had a date, and just a few short days to prepare ourselves, both physically and mentally for what would be the longest morning of our lives.

The first weekend that I spent back at work, just a couple of days before the operation, was a very tense time for myself and the staff who worked with me. They already knew what was going to happen, and when, but did not know what to say to me. What could they have said? When taking the children out to a local country fair, we met up with one of our staff whose baby was about the same age as Robert. Watching me playing with the little boy reduced one of the nurses with me to tears. This incident has always stuck in my mind, as that same nurse was the only person who sent Robert a good luck card just before his operation. The weekend at work soon passed, and at the end of my shift, I quietly slipped away to prepare for the days to follow.

On the Monday morning Anna went up to London as usual, leaving me at home to take care of Matthew for the rest of the day. My aunt, (auntie Jessie to Matthew), had taken a couple of days off work to look after him whilst we were both at Guy’s hospital. My parents were willing to look after Matthew, but only if he went to stay with them. As he had already been subjected to so much uncertainty in recent weeks, we wanted him to be in his own home. After his little brother had left home, and he saw his mummy or daddy going away for most of the day and when we had all been tired, and, at times, irritable, we wanted something to be as normal as possible for him.

After settling down Matthew for the night, it was time for me to walk to the station, hopefully for the last time as the parent of a sick baby, to join Anna and Robert on Rothschild ward. It seemed strange that the trains seemed so much lonelier at night, not that they were wonderfully sociable during the daytime. I missed the connection at East Croydon as all of the destination boards were out of service, so a half hour wait put me on a train which wound it’s way through a lot of the less desirable parts of the greater London area. Although I was certainly nervous about same of the areas that I was traveling through, the most upsetting thing was the amount of time that should have been spent with my wife and baby.

Since arriving in London, Phil Johnson had spent most of his nights sleeping in a chair next to Joseph’s cot. After a few setbacks, Joseph had improved enough for him to be moved into a side room where there was also a bed for parents to sleep in. There is no way that any of the larger hospitals can accommodate all the parents wanting to stay with, or near their children, so having the use of a real bed, or even a camp bed was a great luxury and much sought after. After hearing that the operation was due, without hesitation, he asked to be moved back on to the ward so that Robert could move in for the night and we could have the bed. We thought at the time what a kind thought that was, especially as we always had a bed at the end of our days. Just how special that night was would become more obvious to us in the days and weeks to come. There were people who couldn’t understand why both parents wanted to be at the hospital on the day, after all, it was only an operation, and hospitals all over the country do thousands every day. These weren’t callous people though, they just didn’t understand. They were the lucky ones. Robert had been settled into his cot, and as midnight approached we ourselves went to bed and spent the night listening to the little noises that he had always made since birth. At some time in the night we must have dropped off to sleep, while Phil was back down the ward curled up in a chair.

Look Back In Anguish.

Apart from the obvious, there can be few situations in life that are as distressing as carrying one’s baby down to theatre to undergo open heart surgery. As we were escorted down from the ward by a nurse, the constant worry over the possibility of a cancellation faded and was replaced by an overwhelming feeling of finality. There was going to be no sudden awakening from a nightmare. This was all real and it was happening to us, and it was happening now. It didn’t seem to be the right time for polite chatter, and the silence made the journey from the patient lift to the anaesthetic room feel like an eternity. We had been saying goodbye to Robert every day for the past couple of months, but as we handed him over in the anaesthetic room, like all heart parents, it was now time to say goodbye for the very last time. Many people had told us of the wonderful things that surgery could do these days, which of course is true, but that was the last thing that we, or any heart parent wanted to hear at the time. So, there was just a short time for a last cuddle and a kiss before we were led, shocked and near hysterical away from the theatre area before we did anything to upset the morning’s procedures.

Following advice in a heart parent’s handbook, we decided to spend our morning away from the hospital, and our preselected destination was St. Paul’s Cathedral. This was not for reasons of religious comfort, indeed, those who seek spiritual consolation could well be offended by the blatant commercialisation that had completely overtaken this magnificent house of worship. No, we chose St. Paul’s because the many flights of stairs leading up to the three galleries offered a good chance to burn off some of the nervous energy which was building up in side of us.

Walking over London Bridge during the morning rush hour started us feeling sorry for the teeming thousands of commuters scurrying along to their places of work. No wonder that they call it the rat race. It didn’t matter to us who these people were, or what they did, their very existence seemed to fade into insignificance compared to the surgical team who were now charged with the care of our little baby. Walking through the streets of the city, and stopping for the occasional cup of coffee, the timing, and sequence of events of that morning were never far from our thoughts. Climbing up so many stairs did help to pass the time, and remembering the story of Jesus throwing the merchants and money lenders out of the temple, I was almost surprised not to find a snack bar inside the cathedral along with the show cases and elec¬tronic tills.

Eventually, after a life time of waiting, (actually it was only eight weeks from the diagnosis to the operation), we found ourselves back at the double doors leading onto Rothschild ward. It was thought better that parents should go back to the ward first to receive the news and then be taken down to ITU by one of the ward nurses for the first time. Compared to other parents we had met, we were still relatively new heart parents, and nothing could have prepared us for the last few yards of the walk into the ward. Not being able to bring ourselves to enter the ward proper, we lurked at the end until one of the nurses saw us and came rushing down to tell us that it was all over. The operation was a success and he was doing fine. I suppose that only people who had been through the same thing could have understood the clinging, crying emotional wrecks in the corner, and the sight must have upset some of the other parents until all was explained. We thought at the time, perhaps a little naively, that it would be nice if any tears that may follow ours should be for the same reasons.

Many people since, have turned away from the photographs of Robert in ITU with a look of absolute horror. What they couldn’t grasp was that all of the wires and tubes coming out of his body meant that he had survived the operation and was well on the way to recovery. Like all parents, we had been shown the equipment that would be used the night before so it did not come as a shock to us. Because he was so heavily sedated and ventilated, the first thing we noticed was the normal rhythmic breathing which we had never seen up until that moment. Of course, nothing was guaranteed, the first 48 hours were always critical, so Anna was going to stay for the first night while I went back home to spread the news and take care of Matthew who had been wearing out auntie Jessie with trips to the park and seaside. Before setting off for the station I had to go back upstairs to pass on the news to Phil Johnson, who then presented us with a poem which he had written for Robert whilst he was on the bypass machine. Tactfully, he had waited to make sure that the news was good before handing it over. Over the past two years I have seen a few people reduced to tears by Phil’s poems, but I was privileged to be the first, and proud that he had used my son as a source of inspiration.

Auntie Jessie had looked after Matthew well, even if she had fried his sausages instead of grilling them, but now it was time to get back to normal. There would be no more worrying or fretting as Robert would be home in two weeks at the longest. There would be only a few more days of inconvenience. The next day saw time for Matthew to go to toddler group as we were not going to swap over until the afternoon. Now that it looked as if everything was going to be all right, it was easier for other people to start talking to us once more. Matthew was still at the age where a train journey was a very special treat, so he was delighted to travel up to London with me to meet Anna on the platform who took him straight back home again on the next train. It was my turn for the bedside vigil now, and the next 24 hours would see us in the clear.

That evening, something happened to Robert that had the doctors and nurses rushing around in a state of urgency. Such was my confidence in them that I just moved my chair out of the way slightly and let them get on with putting the problem right. And sure enough, after a couple of injections and adjustments, the problem vanished as quickly as it came. Now there was only the rest of the night to get through. It is strange how callous people can become when they have relatives in ITU. Anna had already been upset by one little old lady who thought that the life of a baby didn’t matter too much as we could always have another, whereas the husband she had left along the way was her lifelong friend and companion. In all honesty though, I didn’t much care about anyone else at the time, only Robert. When a family came into the waiting room in the early hours of the morning, all I could think of was grabbing a couple of hours sleep before rising from the plastic coated arm¬chair at dawn to return to the cot side.

As the Thursday dawned, it was more obvious that the worst was now over. All through the day rapid progress was made as Robert was weaned off of the ventilator, and by the afternoon most of the tubes had also disappeared. It was strange how children, even the very sick and frail could make such a good recovery so soon after open heart surgery, but it was a delight to watch as one more piece of equipment was discarded. This was the last I saw of ITU as the next day was Anna’s turn to come up for the day. And at the weekend I would be at work, by which time Robert would have been returned to the ward. I am sorry now that we didn’t get to know the staff a bit better, but once the operation is over, it was only natural for us to want to be out of ITU as quickly as possible and back onto the ward. Being back on the ward with all the familiar faces was the surest guarantee that all was well, so that is what all parents, us included hoped for. It was such a shame that we wanted so badly to get away from the ITU nurses, because apart from being a great bunch of people, they were only there to give us what we all wanted in the end.

What a difference there was at work at the weekend. Although only a handful of them had ever met Robert, it was a great relief for them when the good news had spread around. For them, working with me the week before must have been like walking on eggshells, and now all was going to be well, the tension could be forgotten. During the quiet periods over the weekend I sat down to write a short article for the heart parents news letter offering some suggestions for ways to pass the time during surgery. Now that all of our troubles were over, I wanted to try to do something to help others in the same situation, and this was the obvious thing to do. It was strange how just writing about our morning out could so vividly recall the emotions of the time, and how difficult it was to write about what was, after all, a happy event. Several telephone calls through the two days brought nothing but glowing reports from the nurses on Rothschild ward. His colour and breathing were back to normal, and by Sunday he was taking, and keeping down, all his feeds by the bottle. The news was all encouraging, and it would only be one more day until we could all go up to London together to be a complete family for the first time since Robert’s poorly heart had been mended.

As we were preparing to leave for the station on Monday morning, Matthew was in a particularly disagreeable mood and played his mother up considerably. At the end of her tether, Anna told him that if he did not behave, then he would not be able to go on the train to London. There then followed a temper tantrum which all children are prone to at some time as they grow up. Although we are not totally strict disciplinarians, we do believe that anything which is said to a child, be it a promise or a threat, should be carried through to the end, which is how I ended up staying at home with Matthew on that Monday morning. This did not put me in the best of moods for the day as I had been looking forward to seeing Robert as it had been four days since I had last seen him on ITU. All day we sat in the house playing with toys and reading books. My day was ruined and I didn’t have the motivation to take him out to the playground. To be fair though, once he had accepted that mummy had gone without us and there were to be no special treats, Matthew was a perfect angel for the rest of the day.

On the Tuesday morning when it was my turn to go and visit, it had occurred to me to postpone the trip so that I could order up the new washing machine that Anna’s mother was buying us so that we would not waste too much of our time washing in the old twin tub when we could be with our boys. The strain of the past few weeks had been catching up with both of us, and there then followed a short lived argument, (the first in over 4 years), after which it was decided to leave the machine for another day so I could see a bit more of Robert in hospital before he came home.

Still not being in the best of moods when I arrived, I was more than a little disappointed to hear that Robert had been sick twice that morning, soiling both of the nice outfits that the girls had dressed him in to see his daddy. Of course, we knew that there would be good and bad days, after the operation, but it was still hard to accept the bad days, especially as he had been so good over the weekend. But the day got harder to take as he was sick over and over again until after three hours it was getting me so depressed that I had to leave him to the care of the nurses. It would be so much easier to come back in a couple of days when he would be back to normal. Phil Johnson had been taking photos in the morning of Robert, and of both of the boys next to each other, so I was able to see how nice he looked in the morning before I had arrived. One boy with several major heart problems, and one whose heart had already been mended. It is ironic really that at the time, nobody really knew which one of the boys was more seriously ill. To this day I am still haunted by the time that I left my son alone in London, because I was unable to cope. On the one hand, it was just a bad day that would soon be replaced by the many good days to follow, and yet, at times, a voice still screams at me that, wallowing in self pity, I walked away and left my own child to die.

The next day Anna went back to London whilst I took Matthew on his usual weekly trip to playgroup. The telephone call came fairly soon after we had finished lunch. Robert had taken a serious turn for the worse, and he had been transferred back onto ITT). The doctors thought that it would be best if I could get up to Guy’s as quickly as possible. Luckily, we still had a few friends left locally, and Matthew was very soon packed off with his pajamas and tooth brush, leaving me to tackle the journey to the Capital through the rush hour traffic. As I sped along the short stretch of motorway, the only part of the journey which allowed any kind of speed, I wished that we had a more powerful car. We knew from work what it usually meant when the parents were sent for, and all sorts of ideas were running through my head. What if I could not get there in time? It would be too terrible for Anna to have to face the impending ordeal alone. Why did I have to walk away and leave him alone the day before? It would be too much to bear if that was to be my last memory of Robert.

Finally arriving at Guy’s hospital I left the car on the site. Although we didn’t have a parking permit, I certainly wasn’t going to waste time trying to arrange one on the spot. After another busy day, most of the lifts were resting, which they do automatically, so I ran up the fire escape stairs. It was quicker than waiting as the ITT) was only on the first floor. Entering the unit stopped me in my tracks. There was no sign of Anna, and a hurried look in each of the cots showed no sign of Robert either. Rooted to the spot in disbelief, I was spotted by one of the doctors who explained that Robert was not on this unit, he was upstairs on Caleb, but there was nothing to worry about as he was perfectly all right.

The Not So Happy Ending.

Nobody really knew what had caused the sudden deteriation in Robert’s condition, but by the time that I arrived the panic was over. He had given the medical staff a scare over the past few hours but then his condition stabilized. However, he would be kept on Caleb for the foreseeable future. All through that first night we kept popping in to see him. We had been provided with a couple of beds in one of the empty rooms along the corridor, so we were~ never really far away. By dawn there was still no change so I drove back home to make some longer term arrangements for Matthew. Once again, Auntie Jessie took time off work to move into our house for a while. But while this was being arranged, things started to go wrong yet again. Robert had started to slip away, but much battling by the staff brought him back once again to a stable, though somewhat critical condition. At once our plans were changed. We decided that Matthew should come up to Caleb to see Robert, as we knew that it could possibly be the last chance he had to say goodbye to his baby brother.

The difference in Robert over the past few hours was very noticeable, he was pale and still, his breathing laboured and erratic. We will never know what Matthew was feeling or thinking as he stood by his brother’s cot, how could a three year old really express himself after being faced with such a sight. After just a few minutes on the unit it was obvious that he was being distressed by what he saw, so auntie Jessie took him off for a picnic before catching the train back home. When the doctors came round, it was time to try to get a few straight answers to some very blunt questions. One, who had looked after Robert since he first went to Guy’s was the eternal optimist. A brilliant man, who has made great contributions to the advancement of heart surgery, could never accept that things could go wrong, and would certainly never let pessimism pass his lips. We appreciated that he was trying to make us feel better with his always look on the bright side attitude but we didn’t want to be given any false hope if there was none.

Another doctor, a female who appeared to always be lumbered with the grotty jobs, probably because she was a woman, spent some time just looking at Robert in his cot and then walked out of the unit, sat on a seat and cried. It was not a sight that we really wanted to see, but it was probably the most honest statement, albeit one without words, that we were given in the last days of Robert’s life. We were also very touched that someone should care enough that their professional detachment could be broken down the way that it was. The cot side vigil continued through the next night, when Robert showed signs of being very distressed. The sister tried to raise the duty doctor to come and intubate Robert to help with his breathing. Having been on duty for more than two days straight, he was unable to stir himself before the morning.

When he did appear, and intubate, it was more and more obvious that there was a downward trend in Robert’s health. As he was constantly fighting against the ventilator, it was decided that the only chance was to set Robert up with a paralysing infusion. The tests still could not show what was wrong with Robert, but it was obvious that his body needed to rest, and by giving him a paralysing drug, the doctors were giving his body the rest it needed if there was to be any ch