Hi it`s 12.45 am on Monday 14th may 2001 and Jack has just gone to sleep.
We launch our web site today so I apologise for the absence of Jack`s page
I sit here surrounded by notes, files, diaries and photographs of my special little boy, but in order for me to compose Jack`s page the way I would like to, the information I require can not be found on pieces of paper. It comes from within.
It`s in my heart and in my soul which is why I ask for your patience because for me to be able to share this information with you, It will mean me having to step back through a very emotional journey.
Back soon Jill Swingler (Jack`s mummy)
I am now ready to tell Jacks story.
I will try to keep the early years as brief as possible but I will start from birth as I believe that something that concerned me at the very early stage of Jacks life could be relevant to what happened over the next few years. Even more importantly could maybe even help Jack in the not so distant future
Within the first month of Jacks life he contracted his first viral infection (Flu). He was prescribed antibiotics which I was very reluctant to give due to his age but being more concerned for my child's health and on the recommendation of my GP I gave them to him.
I could not say for sure when this virus passed because before we came to the end he was ill again (Chickenpox). My GP told me that he would probably only get one or two spots and would be fine due to the fact that he was being breast fed which helps to build their immune system. Not so for Jack. He was covered head to toe and they were turning septic around his bottom. I tried to keep his nappy off as much as possible but Jack had very loose bowels and would soil his nappy 8-12 times a day every day.
Chickenpox went and along came the next virus, and the next, and the next. These were not 24 hour bugs nor would he get over them in a few days, they would last months with only a few weeks of good health in between.
I was becoming very concerned about my child's health and very worried that a child of Jacks age could be prescribed antibiotics so often. I turned to my GP for reassurance and to see if anything else could be done. His comment was “When he is ill bring him to see me and I will write a prescription”. I felt angry and upset . Jack was not getting the best medical assistance and I was very reluctant to give any more antibiotics as they did not seem to be having any effect.
I decided to find out about alternative medicines, to get to the bottom of why Jack was always poorly. I was put in touch with a Homeophatic doctor. He said that he could not see Jack or conduct any tests due to his young age but something extremely fascinating came out of our lengthy conversation. We went back through the history of my pregnancy at various stages including dental treatment and Jacks first few months of life.
Then he told me that he was almost sure that Jack had some form of Mercury poisoning and very little or no immune system.
He advised me not to give anymore antibiotics instead he gave me a combination of herbal remedies. Everything we had discussed made sense and I knew I would do anything to see my little boy well again.
Off I went to discuss my findings with the “professional bodies” there I was met with negatives and blank looks and the matter was dismissed. Jack was gaining weight and eating well but still soiling nappies 8-12 times daily and always full of colds and flu.
We were then met with another obstacle SLEEP APNOEA. You see Jack would cough through the night and be so congested with mucous due to the constant viral infections that he would be sick. So we would have to change his bedding and clothing two to three times a night almost every night. During this time we noticed he would stop breathing for around six seconds and then gasp for air and so on. At first we thought this was because of the constant run of viral infections it soon became apparent that this was not so.
This was one of the most frightening and anxious times (the first of many more to come) I would sit beside Jacks cot watching him sleep counting the spaces between each breath. (He would breath for two to three seconds, then stop for six, sometimes more) I was terrified, frightened to go to sleep, if he coughed I would quickly pat his back to try and prevent him from being sick. This went on night after night.
I told my health visitor of my worries and she too was concerned, but unfortunately my GP thought I was an over protective mum.
During the constant flow of viruses Jacks health seemed to deteriorate more and more, he started to lose weight , become limp and at times seemed almost lifeless. ( In a period of one week Jack lost 7 pounds) I got an appointment to see my GP again. Carrying Jack in my arms fighting back the tears I asked him to help. He said there was nothing to worry about. I demanded a second opinion and would not leave his office until I had an appointment to see a Private Consultant.
During the time that had passed there were concerns raised that Jack could be deaf or have hearing problems along with concerns with the delay in his development. At this time I was told not to worry as the delays could be due to his ill health.
Jack had a constant stream of mucous running from his nose, mouth always open so he could breath and a smelly discharge from his ears.
I was lucky to have a good health visitor who had already viewed her concerns and started a Portage program with me. She would visit weekly to teach me how to do each task with Jack then I would adapt them until I could find a way to get him interested. Some tasks Jack would do quite quickly others proved to be impossible but with a great deal of time, love, perseverance and a great deal of trial and error we would work our way through completing as many tasks as possible.
We had seen speech therapists, hearing specialists, paediatricians, dieticians, GPs, the list was endless, one after another , week after week, examination after examination, which in itself was very stressful as Jack would object to anyone but me having close contact.
I got my appointment to see a Private Consultant later that afternoon, and still my GP felt there was nothing to worry about and now told my husband that I was being over protective.
After our first private consultation I felt so relieved. (someone had actually listened to me and my concerns). He arranged for a number of tests to be conducted and arranged for Jack to have them on the National Health due to the amount of costs that would be involved. He examined Jack for respiratory problems and told me he had Sleep Apnoea due to an obstruction (tonsils). He arranged for us to see an ENT surgeon and advised a tonsillectomy, along with grommets to be fitted and adenoids to be removed. Appointments for tests came and went with Jack becoming more and more withdrawn. Still no answers
I felt desperate, alone and confused. I would pray every night and often cry myself to sleep.
Jack is my precious little boy and I would give anything in the world to help him if I just knew how.
I would hold Jack so close as often as he would let me, sending him as much love through my body to his as possible. I would talk to him constantly telling him how special he is and how much he was loved. I would apologise for what he was going through and promising him that I would not give up and would do everything in my power to help him, to love him and to always be there for him. I would not accept the words NO from the so called “professional bodies” and would devote my every waking moment to helping him and teaching him. If that is what it would take.
I keep all of my promises and I will keep true to my son for the rest of my life.
We saw the ENT surgeon who agreed Jack should have grommets fitted and his adenoids removed but he told me “he has a rare form of Apnoea which was caused in the brain”. He then went on to tell me he knew of no surgeons in this country that had operated on children with this condition and only a few that had operated on adults. So at this time nothing could be done.
I was devastated I left the hospital holding Jack tight in my arms and cried a river. I did not understand. What was he saying?, What did this mean?, Could this really be true?. I could not and would not accept his diagnosis so once again I made an appointment to see the Private consultant who had made the first diagnosis. He too disagreed and wrote personally to the surgeon about conducting a tonsillectomy.
By now it was becoming almost impossible to get Jack to appointments. He would scream and become violent as soon as we approached a hospital and had to be restrained in order to conduct any examinations.
On the second meeting with the surgeon I asked for a nurse to be present hoping that she would be able to explain more (but no luck) Jack was booked in for adenoids and grommets. Months passed and Jack was still trying to cope with one virus after another, he had so many appointments for various specialists we lost count . I continued fighting, learning and teaching.
I saw a dietician who I was referred to by the private consultant due to the amount of soiled nappies we were still getting. We changed Jacks diet and took Jack from Cows milk to Goats (no change) and still no answers from the test results apart from low Iron
After a long wait and far too much poking and prodding Jacks appointment came for his grommets and adenoids. Jack would become so distressed if anyone unfamiliar came near him that the simple procedures were long, challenging and agonising both for me and for Jack.
Jack would not allow a pre op or any form of injection so I had to take him, sit him on my knee and hold tight while they put him to sleep.
I felt sick and guilty. In-between all my tears I kept telling myself that this would help Jack.
It was all over very quickly, well for the surgeons that is NOT FOR JACK. He came around screaming, throwing his body around and pulling out the tubes. There was blood tears and gunge. Nurses rushed to hold him down and to hold me back. At that moment my heart broke and I begged them to let me comfort him.
I held Jack tightly in my arms trying to calm him and wipe away the tears from both our eyes. Eventually Jack fell asleep.
Within minutes Jack was gasping for breath (Sleep Apnoea) I called the nurse who observed as Jack took a few tiny breaths then stopped and so on . She called for the surgeon immediately to take a look at Jack, and after examining him he said we will have to do a tonsillectomy as soon as possible as his tonsils were restricting his airways as he slept.
Jack was allowed one week to get over his ordeal before being re admitted.
And yes it was the same surgeon who had seen Jack twice before and had told me there was nothing wrong with his tonsils and the problem was being caused in the brain. Once again NOT SO.
I was pleased that Jack would be able to breathe after the op but angry that the surgeon had not listened or been thorough enough with his previous examinations. You can imagine how traumatic it was for Jack to go back to the hospital for another operation so soon. One week later back we went. I arranged to take Jack home as soon as possible after the second operation and all agreed that it would be best for Jack.
As he slept at home for the first time after the operation it felt like time had stood still.
It was me holding my breath this time as I waited and watched him for hours and then the flood gates opened. I was so relieved. My precious little boy could now sleep and breathe normally. He no longer had Sleep Apnoea.
It had taken two years from first noticing that Jack had a problem with Sleep Apnoea to getting the right treatment.
2 years of worrying unnecessarily,
2 years of gasping for breath, vomiting and choking.
2 years of sleepless nights and many many tears.
Those two years had finally come to an end.
Although Jack could now sleep properly and seemed to be hearing better, Jacks struggle was far from over, he had become so withdrawn that not only would he try to isolate himself at home but he refused to leave the house or get dressed.
As the next few months passed it was a long slow process first tempting him into the garden, (still undressed) then trying to get him into the car, he would scream and become violent once in the car and still would not get dressed.
I spent months with Jack using sweets as bribes driving for miles to different car parks reassuring him , trying to make it fun and familiarising him with the outside world again.
I would avoid the routes we used to take to hospitals or surgeries as these seemed to terrify him.
Eventually our perseverance paid off and I would even get him dressed once we had reached our destination, as long as it was somewhere familiar and a place he felt safe and wanted to go.
So as one chapter ends another one begins. Jacks developmental delays could now have my full attention.
Read Chapter Two