44 weeks and counting: My Diagnosis

Me:I don’t remember much about the events of that one Sunday. I have a lot of “snapshot” images that I live with and still regularly remember, relating to the early years of living with type one – often as a result of fear or embarrassment. Maybe they serve as a useful reminder of how serious a condition this is. I think they remain embedded in my psyche and have undoubtedly contributed to my background awareness of the complications and health risks that may follow, should I not devote sufficient time and attention to managing the condition. 

That Sunday – 5th March 1972 - I remember sitting on my mother’s lap in the back of the car. I don’t remember getting into the car. My overwhelming memory is just how thirsty I was and how desperate I was for a drink. I kept asking Mum for a drink. Nothing else mattered to me - I just needed a drink. 

Dad:On the first Sunday of the month, Margaret and I and the two girls were due to go on one of the regular hikes in the Peak District, organised by the Headmaster of the School that both Debbie and Sarah were attending.  However, when the day came, Sarah seemed unwell and we doubted her fitness for a long walk. Margaret thought it best to keep her at home and in bed and resolved to call the doctor next day, on the Monday morning. Debbie had been enjoying the hikes and had no difficulty with the distances, as had also seemed to be the case with Sarah, and we thought it important to support the School in its admirable efforts.  So we decided that I would go on the walk with Debbie, while Margaret stayed behind to look after Sarah.

Mum:The particular Sunday when you were hospitalised, you were obviously unwell, so I stayed at home with you while Dad and Debs joined the hike. You were very lethargic and in bed. Later that afternoon you suddenly vomited quite violently. I stripped the bed and ran a bath for you, to clean you up. I was horrified to find you looked quite skeletal, almost like some of the pictures I have seen of concentration camp victims. I got you back into bed and phoned the surgery in a panic. By the time the doctor arrived, your breathing had become quite laboured and noisy, your breath smelt like pear drops and you were very drowsy. 

Dad:Prior to us arriving home, Margaret had telephoned the doctor explaining her concerns. Her nursing training made her feel convinced that Sarah must have Type 1 Diabetes, but she had no expertise in the field and found it difficult to believe: we had, so far as we were aware, no family history of diabetes, though we now know that hereditary factors are frequently absent in such cases.  I think she was mostly feeling that “this cannot be happening to us.” When the doctor eventually arrived, just before I got home with Debbie, he confirmed that Sarah had Type 1 and said that we needed to get her to hospital immediately, as she was falling into a hyperglycemic coma.

The doctor phoned around trying to find a hospital that could take Sarah, but the region was suffering from an outbreak of measles and the children's wards of the major hospitals were closed to further admissions.  Eventually, he found a place in West Park Hospital, in Macclesfield. He told us to drive Sarah there ourselves to save time. Every minute counted and the delay in waiting for an ambulance was a risk that was better avoided.  A good friend and neighbour, agreed to come and stay with Debbie.  We wrapped Sarah in a blanket and Margaret held her.  She drifted in and out of consciousness as I somehow managed the half hour drive to the hospital, which was in an area I did not know.

Mum:I do remember vividly the nightmare car trip to the hospital. The GP felt it so urgent to get you into hospital quickly that he felt a delay in waiting for an ambulance would be a mistake and we could drive you more quickly. You were only semi-conscious. 

Your veins had “collapsed” and on admission to hospital, there was great difficulty in inserting a cannula to provide fluids and insulin. Eventually they did a surgical venous cutdown into your ankle. You were put into a bed isolated in a closed off glass area at one end of the children’s ward, until you were considered out of danger. 

Debs:I remember knowing Sarah was unwell and having been under the weather for a number of weeks, think it had been explained as a flu type virus. Due to the urgency of Sarah being taken to hospital, there hadn’t been time to explain much to me about what was happening. I knew Mum and Dad were very worried and my instructions were to be a “good girl” and do as I was told. I just remember feeling very frightened. I expect the neighbour didn’t know much more either but she didn’t talk to me about what was happening or how I was feeling and put me to work helping with the washing up before I went upstairs to bed, where I lay awake worrying.

Dad:The first few hours were critical and we could only wait, pacing up and down anxiously, to find out whether she would pull through.  Late in the evening, we were told that she had stabilised and the worst was past.  No facilities were available for us to stay at the hospital overnight and we just had to tear ourselves away, and drive home.  As we walked towards the exit from the ward, we looked back at Sarah’s frail figure in the hospital bed and inwardly wept.

Margaret returned to the hospital the next morning and subsequently spent as much time as she could with Sarah while she was in hospital.  I had teaching duties which I could not offload at short notice, but I went to the hospital when I was free to do so.  

After two days, the drip was removed from Sarah’s foot, a good sign, though Margaret noticed a small red area on her heel, which gradually enlarged and turned black over the next few days. Margaret became more and more concerned and asked the ward sister to look at it.  The nursing staff had not noticed the blister but, when they inspected it, they said it was nothing to worry about and they chided Margaret for fussing unnecessarily. 

Mum:The cutdown into your foot meant that you were bedbound for a number of days and a pressure sore developed on your heel. I was anxious that I was having to point out its development to staff and that it was not being monitored or treated.

Me:Once well enough to be moved onto the main ward I was initially in a bed positioned directly opposite the nurses’ desk. Being bedbound, I remember having to sit on metal bedpans, often still warm. I hated the drugs trolley wheeled around the ward at set times of each day, with nurses placing tablets for swallowing into a little white paper cup. The tablets were enormous and as a small seven year old, I struggled to swallow them. It took me a long time to get over the panic associated with swallowing tablets and I still avoid taking them today unless absolutely necessary.

At night the ward became quiet. The nurses’ desk had a small table lamp that stayed illuminated whilst ward lights were switched off. If I needed to attract attention, I found it hard to shout loud enough to be heard – worried about waking up the other children. I remember one episode very vividly - I can still hear myself shouting “nurse”, afraid of getting into trouble and no-one coming. She was not at the desk and although the episode probably lasted minutes, I needed the toilet, I felt like I had been calling for help for ages and felt mortified at ending up wetting the bed. 

I looked forward to Mum arriving in the morning to spend time with me although judging by the fact that no other parents were ever there at that time of day, I think it probably went against all the rules. There were very strict visiting procedures. Other children would sometimes bring a chair from where they were kept to my bedside as Mum arrived. With the attention she generated and the unfailing visits, she took on a super-hero status in my mind. There was one morning that she couldn’t come. She had put a couple of comics in a brown envelope to give me as she left, to remain unopened until the following morning to help act as a distraction. I was in such floods of tears as she left that she gave me permission to open the envelope there and then.

Dad:When I went to visit Sarah the following weekend, she was allowed to get out of bed and we were encouraged to take her out into the hospital grounds for some exercise.  We took her tricycle over to the hospital and she was able to cycle around, looking more like her former self.  

Me:I remember pedalling around flowerbeds with daffodils and crocuses in flower. Dad commented on the signs that said “Bulbs please keep off the grass”. The lack of a strategically placed comma allowed him to joke about how the bulbs were not paying attention to the request! Dad jokes brought back a sense of a return to normal.

A colleague of Dad’s from Manchester University and his wife came to visit me. They lived a ten minute walk from us in Handforth and we sometimes had Sunday lunches with them. Judy had made a cardboard cut out of their dog Jonah and a pink cardboard chart for a month, so that I could record the injections I had received each day. I was thrilled with both and didn’t think to question what happened at the end of that month. 

Debs:I remember very clearly the visit and feeling very envious of the attention and gifts that Sarah got (especially the cardboard dog). I knew that I shouldn’t voice these feelings as I was the lucky one not being ill. I was also the older one, so supposed to know better and to not make a fuss. My life however did feel very different and out of control and I very much wanted some time to understand what was happening. Every day after school I went straight to the hospital with Mum and I could see how worried and upset my parents were. All the conversations were about Sarah’s treatment and prognosis and their concerns about the hospital and I just needed to be very good and not make a fuss about anything. 

Dad:The nursing staff tried to educate us in the management of type one. I fear we were not very good students.  Under the stress, we kept forgetting details and needed to ask the ward sister to go over the details again: Sister showed her impatience with Margaret more than once.

Mum:The ward sister was an older impatient woman who made no allowances for the shock I was still feeling. She would get very angry when I asked her to repeat things because I couldn’t always remember what she had said about how we must manage your condition.  There were no fact sheets made available and the internet, that is now able to help enforce the understanding and management of the condition was a long way from existence. 

Dad:Although Sarah was gaining strength, day by day, and looking more like her former self, her problems were not over. The blister on her foot seemed to be getting worse and the doctors were now admitting that it was not clearing up as they had expected.  However, twelve days after her admission, they decided she could come home and we were given materials to dress her foot at home.  For the first time, we had to take full responsibility for her daily diabetic care.  

During the following week, Margaret returned with Sarah to the hospital for a review of progress.  The urine testing readings were accepted as satisfactory but the inflammation on Sarah’s heel seemed to be spreading.  The junior doctor who examined Sarah called in the consultant to examine the heel and she decided that Sarah should be readmitted to the hospital.  This was a set-back: we wanted, above all, to settle into a routine for managing Sarah’s condition at home and to consolidate the expertise we should need for the long haul that lay ahead.  Our anxiety was increased by the refusal of the consultant to give any information about the proposed treatment or the prognosis.  In those days, senior doctors often behaved arrogantly and appeared to have little consideration for the feelings of patients and their relatives and we were experiencing such behaviour.  But we had to agree to the readmission – we had no alternative.  

After a few days, Sarah’s condition seemed to go from bad to worse.  Four days after Sarah’s readmission, the junior ward doctor examined Sarah’s heel and told us that he thought it had showed no sign of improvement: he would ask the consultant to examine it on her ward round the next day and he thought she would probably suggest surgery, by which we understood him to mean a skin graft.  Margaret was becoming increasingly concerned at the general nursing and medical care Sarah was getting.  The lack of progress with Sarah’s heel, and the lack of any clear picture of a plan for dealing with it, aggravated matters.  The consultant was very high-handed and refused our repeated requests for a discussion about Sarah's condition, the treatment that might be needed and the options, if any.  At no time did we have a proper discussion with the consultant.  

Margaret and I discussed the situation in the evening.  We knew that the University had a strong link with the highly regarded children’s unit at the Hospital at Pendlebury and we agreed that I would have a preliminary discussion with a colleague in the Faculty of Medicine, about the possibility of having Sarah cared for in the specialist diabetic clinic at Pendlebury. He was helpful and understanding and promised to have a word with a colleague at Pendlebury who could arrange to takeover Sarah’s care.

When the consultant at Macclesfield undertook the next examination of Sarah’s foot, we were not allowed to be present, but she told Margaret afterwards that surgery was not needed and added cryptically that the wound was “healing nicely.” This seemed so far at variance with what we could see that we suspected that it was designed to keep us quiet.  Margaret felt she had endured enough and asked the consultant to agree to transfer Sarah to Pendlebury.  In the stress of the situation, she had rather jumped the gun, though she did not complain about the treatment, but tried the face saving formula that it would be easier for us to visit Sarah at Pendlebury.  The consultant was visibly angry and turned on her heel and walked away. A junior doctor then came to speak to Margaret and get further details. He telephoned the Hospital at Pendlebury but discovered that the Department there had not yet been contacted about the proposed transfer.

I was telephoned that afternoon by my colleague. At first, he was cross with me for putting him in a difficult position in relation to the consultant at Macclesfield, whom he happened to know.  I apologised and said that I had not meant to embarrass him but that I was desperate, as a father, to get good care for my daughter. At that he relented. He acknowledged that the consultant at Macclesfield Hospital was known for the behaviour that I had experienced. He observed that "If somebody shouts when you tread on their foot, it is probably because they have a sore toe.” He confirmed that he would put in a word for me at Pendlebury.  I wrote to the consultant at Macclesfield, formally requesting that they refer Sarah to Pendlebury.

Meanwhile, Sarah continued to receive treatment of slight but various kinds at the Hospital in Macclesfield.  Ten days after her re-admission, she told Margaret that the junior doctor had looked at her foot again that morning.  Margaret asked one of the nurses for the latest views about the foot.  She replied that it was confidential.  She had obviously been warned not to give any ammunition to us trouble-makers.  Margaret asked to see the junior doctor but he did not come.  The next day, Margaret returned to the hospital and asked why she could not take Sarah home.  The only medical attention Sarah was getting was periodic dressing of the infected area on her foot and Margaret could do that at home.  She was concerned that Sarah had been on complete bed-rest for 11 days, with no end in sight.  The hospital staff simply said that they believed Sarah should stay in hospital but they would not explain their reasoning, nor give any indication of how long she might have to be there.  At that Margaret just lost patience.  She discharged Sarah from Macclesfield, signing a form to acknowledge that she had done so against medical advice.

Dad:A short while after you came home from Macclesfield, I had a kind of emotional meltdown.  My inner grief had been building up to the point where I could contain it no longer and I broke down in tears at home and cried inconsolably for a few minutes.  I just found the thought of my lovely and bright daughter having to cope with the problems for the rest of her life almost unbearable.  It was a kind of mourning and I had to get it out of my system.  Mum thought I was over-reacting and things would not be as bad as I feared.  

Debs:I remember the moment Dad “broke down” and sobbed but I remember it slightly differently. I remember sitting at the breakfast table and Mum had been on the phone to the hospital as she always did first thing in the morning before she dropped me off at school en-route to the hospital. In my memory, Sarah was still in critical condition and Mum and Dad were worried she might not “make it”. The phone call confirmed that Sarah was out of danger for the first time. When Mum relayed this information to us sitting at the dining table, Dad just sat and sobbed. I remember being so shocked because it was the first time I had seen my father cry and I did not know what to do to make things better. I was also confused as I thought it was good news that Mum was telling us. In fact Mum asked him why he was crying now that the immediate danger had passed and of course he explained that it was the relief from suppressing so much fear. The horror of this moment stayed with me and confirmed how awful Sarah’s “illness” was.

Mum:I felt very strongly that we must manage the condition as best we could and was emphatic about three aspects – food and meal times, following the rules and involving Sarah as much as possible in the management of her condition. 

Dad:After that episode, I was able to put my grief aside and focus on what we could do to make the best of things, learning about the condition and doing what we could to help you through it.  It was a cathartic moment.