Ben's Story
Ben was born on 27 September 1999 at the John Radcliffe Hospital, Oxford. He was 7lb 11 1/2oz. Not long after Ben was born I asked if I could have a bottle to feed him, the nurse gave me a bottle, however I could not get Ben to feed. Eventually a nurse said she would feed him, which she did in front of me. The nurse also had difficulty getting Ben to feed and he went blue. The nurse ran off with Ben and when she came back Ben appeared fine, however this incident was never investigated. From this point on Ben had a bottle every 20 minutes day and night. I was advised by health care professionals that this was not a good habit to encourage and that I should not feed him and let him cry, but I had a feeling something was wrong and knew I could not stop his 20 minute feeds no matter how hard I found it.
When we came home from hospital we had already bought a Johnson and Johnson baby monitor with a sensor pad (I had been given vouchers from my work colleagues but I had already bought everything I thought I would need and I also bought it because I am a little paranoid). During the following months the monitor alarm regularly went off often several times each night, indicating that there had been no movement for 20 seconds. My husband and I would race up the stairs and most of the time Ben would be breathing normally by the time we got up there but on occasions he would need to be picked up in order to make him breath. I did report this to both health visitors and doctors but was led to believe that I was a very anxious parent.
During this time I would take Ben to be weighed regularly. At these visits it was found that Ben's weight was not increasing as it should, despite the fact that he was getting fatter and fatter and he was eating very large meals.
After speaking to medical staff and being made to feel paranoid I contacted Johnson and Johnson explaining the situation. They advised me that they would replace each individual component of the baby monitor one at a time and see if there was any change. This they did and the monitor continued to alarm. This time we went to the GP and insisted we be referred to somebody at the John Radcliffe Hospital. This was done and we were quite quickly sent an appointment to see a chest specialist. My husband and I decided that if they said Ben was OK we would start putting Ben in his own room at night and try to relax a little (as by this time we were beginning to believe maybe we were over anxious). We took Ben to his appointment where the registrar took a history and then listened to Ben's chest and told us that Ben was fine and that we had nothing to worry about. We moved Ben into his own room that night but I just couldn't leave him so I slept on a mattress on the floor.
Three days later my husband and I were having our lunch (Ben had already had his lunch about 20 minutes before) and I said to my husband "ahh look at Ben he's day dreaming" but within seconds he had started to fit and had gone blue (it upsets me now to even put this into words and I have got tears pouring down my face to think what might have happened to our wonderful little boy). My husband jumped up and dialled 999 and despite being a nurse I had no idea what to do. I have no idea how long this went on for it felt like forever. The ambulance control thought he may be fitting due to a high temperature but I knew he did not have a temperature. They told my husband to take all Ben's clothes off. By the time the ambulance arrived Ben had stopped fitting and was breathing normally. Ben was taken to the John Radcliffe Hospital where he had blood tests done and he was thoroughly examined. We were told there was no obvious reason for what had happened but they would admit him for observation. After 3 days Ben was discharged with a tentative diagnosis of an epileptic fit.
The next day my husband had to go back to work as he is self-employed but thankfully my mum was with me. Ben had some of his breakfast and then he started to go blue again and floppy. We had been told that if we had any further problems we should take him to the GP, so my mum rang them and they agreed to see him straight away. When we got there he was seen by a locum, She immediately said we had to take him back to the hospital with a letter from her.
On arrival at the hospital the same doctor was on duty so he knew Ben. One of the first things they did was Ben's blood sugar, which at that time I believe was 1.2 mmol/ls. At this point they went away to discuss between themselves what was going on. By chance a doctor completely unrelated to the case was passing and overheard and suggested PHHI or at least hyperinsulinism. Ben was admitted with a glucose drip and it was decided that his bloods would be sent to Bristol to see if he had hyperinsulinism and he would be commenced on Diazoxide and Chlorothiazide. The blood results took 2 weeks to come back. However that night at about 3am the doctor on call came to see my husband and I and said things were not looking good and Ben's blood sugar was continuously dropping despite the glucose and that we would have to prepare ourselves for the worst (I am crying again trying to put this into words).
Then suddenly within a short space of time Ben began to respond to the glucose and from then on he has done so well. He was like the ward clown and despite being only 6 ½ months old he spent his whole time making everybody laugh. Ben spent 3 weeks in hospital being stabilised on his medication and was then allowed home.
The first day we were home my husband had to go to work and there was nobody else around, the world felt like a very scary place to be. It was about a week later that Ben's consultant told me Julia Killengray had started a support group. I phoned Julia when I got home and it was unbelievable the relief I felt to realise that we were not the only people going through this scary time.
Ben is now a very fit little boy who loves all kinds of sport. He has been admitted once to try and get him off the medication but this was unsuccessful so he carries on taking that and as far as he is concerned he is no different to anybody else and he thinks everybody takes medicine twice a day. We know just how lucky we are that we have got Ben and of course his little sister Abbie who thankfully has had all the tests and does not have CHI.
