My husband and I were married in October of 96 and looked forward to starting a family as soon as we had our house built. After many delays on our house we decided that we had waited long enough and wanted desperately to start a family. We went on a second honeymoon and planned to conceive whilst overseas. Our wishes were granted and our baby was due to arrive in June '99. We were thrilled to bits! Being a Primary School Teacher I love children and hoped to have a large family. This is now not the case. One, maybe two will be fine!

My pregnancy, whilst exciting, was a rather stressful one. A threatened miscarriage, further blood test results indicating Down Syndrome at 22 weeks leading to an amniocentesis, ongoing tests relating to diabetes and other non-related pregnancy issues all made my pregnancy more difficult. Although the day to day excitement of bringing new life into this world never dulled, no matter how the rest of our lives were collapsing around us. In retrospect I wonder how much of this stress may have contributed to Jackson's condition.

June arrived and after 41 weeks, twenty hours in labour and an emergency caesarean Jackson arrived in all his glory. A beautiful baby boy! I still recall the overwhelming feeling of love I had for this child the moment I heard him cry. Although that feeling of love still remains, his cries, in the following months, brought about a huge range of feelings, some of which I thought I could never have for my own child. It is amazing what lack of sleep and sheer exhaustion can do to a person. After his birth all seemed well, although extremely exhausted, we returned to the maternity ward. Four hours later Jackson was rushed to the New-born Services area with a suspected infection. The nurses explained that it was due to poor feeding and jittery behaviour. He remained in this area for five days. During that time he was fed intravenously for two days and then placed on demand feeds. It was then when a doctor noticed him possetting and suspected a twisted bowel. Jackson underwent investigations of the bowel, which showed nothing. He continued to posset and started to scream in pain by day three. The nurses placed him on his stomach, gave him a dummy and told me that he had wind. I now believe that it was then that the reflux began.

After a traumatic time in hospital we headed home with our beautiful baby feeling that things could only get better. This was hardly the case. Jackson continued to be a very poor feeder who had difficulty latching on. He would arch his back and scream in pain. After one and a half hours, attempting to feed him, he would fall asleep. Only to wake twenty minutes later screaming and distressed. He would become very tense, turn purple, hold his breath, draw his legs up and scream in agony. This screaming would often last from feed to feed. I spent most of time attempting to console him. I would check his nappy, burp him, pat him, rock him, and so on, nothing seemed to work. My health nurse diagnosed him with colic and recommended I tilt the crib and give him a little Mylanta. Still no change.

At three weeks of age I contracted food poisoning, surprisingly as I ate very little during this time, and my mother came to help me. She couldn't believe his behaviour as nothing she could do could console him and make him sleep either. She convinced me that there was something wrong with the baby, so at four weeks of age we arrived at the Emergency Room with a screaming baby. Three hours later we came home after being told it was a relationship problem between mother and baby. The screaming continued. The next morning we returned to Emergency and demanded to be admitted. For six days I slept by my baby's side as he screamed in pain. They paid little attention to his behaviour but ran a few tests to alleviate my concerns, still no results. They did notice that he was an extremely tense, alert baby who had some feeding problems. On day four I asked for a pH study to be conducted which I was told would tell me whether he had reflux or not. One nurse even guaranteed me that the test was 100% accurate in diagnosing reflux. On the day of the test Jackson remained awake, distressed for fifteen hours straight. Surely they could see that this was unusual behaviour for a four-week-old baby!!! The results of the study failed to identify reflux. My hopes for an explanation were dashed once again. On the sixth day they released us telling me that things would improve. I returned home, gave up breastfeeding and we had a different baby for four days. Relatives then claimed," He was just hungry!" When that undeniable scream of pain returned on day four, I knew that they were wrong.

In the following weeks I continued to sleep on the couch in between the screams, I barely had a chance to shower or eat as I wheeled Jackson around the house in his pram. I dragged myself to nurses and paediatricians searching for answers but often got more dejected after being told that things would only improve and that things were difficult with your first child. Their total lack of understanding was truly exhibited when a maternal health nurse sympathetically patted me on the knee and told me that I needed to talk to baby more and drink a glass of wine each night. I cried with Jackson all the way home but did decide that drinking a glass of wine each night was not such a bad idea!

At week seven I attended a 'sleep centre' hoping my prayers would be answered and they would solve all our problems. On the second day, once again, Jackson stayed awake for fifteen hours and was inconsolable. We tried everything and even increased his feeds. This only made him worse. That day was probably one of the lowest moments in my whole life. I was suffering from depression and felt that my life had no meaning; I was a hopeless mother who could no longer physically or mentally care for this child. I even contemplated giving him up for adoption. The centre wanted to put me on antidepressants but I refused. If only they could have helped my baby, I would have been fine. In the following days things did improve and I persisted in implementing their methodology of eat, play, sleep. What else could I do, that centre believed that the sleep/distress problems were behavioural!! However, I did leave the centre feeling a little more positive. So with a vast knowledge of settling techniques under my wing I headed home with my baby.

My feelings of hope were soon lost in the cries as Jackson continued to get worse. He gained little weight, would object to being nursed and would only feed whilst in an upright rocker. So much for bonding! I still recall the ache in my arms and pain in my back from carrying him around all day and night, the pain in my stomach from him thrashing about kicking, and the sheer exhaustion I felt from driving a screaming passenger to doctors after having a total of eight hours sleep in three days. There were many times that I could barely see the road ahead of me.

By nine weeks of age Jackson was placed on atropine for the pain. Yet another medication that failed. Jackson's condition continued to worsen, he became extremely listless and pale, and eventually he refused to drink his milk so we returned to an unsympathetic paediatrician. Jackson had always seemed to have difficulty with bowel motions, sometimes grunting and straining for over twenty-four hours. We added Maltogen to his bottles and performed daily leg exercises to stimulate the bowel. I have since learnt that he may have had some intolerance at the time. By eight months of age, things did change and it was not unusual for Jackson to produce five to six dirty nappies a day, and the straining had stopped. Anyway we told the paediatrician that Jackson was refusing to drink anything, milk or water, and explained that we thought he had some bowel problems, and that coeliac disease and irritable bowel syndrome were in our families. The paediatrician explained to us that no baby has ever died from starvation and that our son Jackson would not be the first. He placed Jackson on a soy formula and sent us home.

The following day Jackson was very ill and moved very little. We desperately tried to get some fluid into him but he refused. After twelve hours without fluids we rushed him into the hospital and he was admitted for observation. Once in hospital Jackson behaved beautifully for all the doctors and began drinking again. He screamed less but still remained awake for long period of time. Once again we left hospital being told that our child has colic and that things would improve by three to four months. I then started counting the days.

In the following weeks we continued to see a head physician who insisted that he had colic. He also recommended I do some professional reading, in my spare time, regarding dealing with unsettled babies and sleep problems. At this point I lost faith in yet another member of the medical profession. I did follow part of his advice and visited a new paediatrician who dealt primarily with sleep disorders. Still no solution. At my wits end after four months of no sleep we finally decided to try a sedative, with the help of a local GP, we dubiously put him on Phenergan. This made no difference at all. As he grew the screams did subdue slightly, as we could now distract him from some of the pain, however he continued to appear so unwell, slept very little during the night and stayed awake most of the day. Averaging around 8 to 10 hours sleep per day, in short catnaps. Throughout this whole struggle Jackson put on very little weight yet no one seemed too concerned.

At four months of age my hopes for an answer were raised once again. Whilst visiting our local doctor she noticed him possetting and suggested we try him on an anti-reflux formula. I strenuously stated, " He couldn't have reflux, we've had a pH study done!" She insisted I try the new formula, so off to the chemist I went, desperate for anything that could help my baby. At 8.30pm that night I received a phone call from my very concerned doctor who had been doing some reading and had learned that not all pH studies were accurate in identifying reflux. I was completely dumbfounded to think that all this time my baby could have a treatable condition. She placed Jackson on Zantac and our baby started to smile. He continued to have refluxing episodes but overall he was a more content, relaxed baby whom I could finally hold to feed. Occasionally he would even fall asleep on the bottle. He was now sleeping a little more.

The light at the end of the tunnel was dimly shining and brightened even more when I found an association that supported parents of distressed infants. One night I called a lady called Joy from DISA who listened attentively to my story and told me that I was not alone, and that my baby must be in pain. She soon sent me a copy of her own story about her son, Lucas, and it sounded all too familiar. I remember crying as I read her description of the intense pain and suffering she felt being a parent of a distressed infant. I too shared her feelings of despair and frustration at not being able to console my child, and deep down knowing that something was wrong, and that this was not normal. The hours I spent crying with my child and the shame I felt for leaving him in his cot to cry when I could no longer bare to listen to his heart wrenching screams. There were many times that I planned to run away from it all as I often blamed myself for his pain. "I must be doing something wrong, it's me!" I thought. I understood her anger towards other mothers and the resent I felt for them for having a 'normal' baby. Part of that resent remains with me today and I continually look into prams and see content, sleeping newborn babies.

From reading her story I no longer felt so alone. I too had experienced so many similar things, one experience we shared, probably hurt and drained the most out of me, in my search for answers, was the feeling that no one really understood how severe our problems were. The sheer lack of belief and concern I received from nurses and doctors who continued to send me home with this inconsolable child. Finally I had found someone who did believe me and that had been my biggest hurdle.

Part of me wanted to jump for joy to discover that we were not alone, and the other part of me wanted to cry and never stop as I reflected on the past five months of unnecessary suffering. Joy put me in touch with a Paediatric Gastroenterologist named Dr Don Cameron who did believe us. He arranged for another pH probe and a gastroscope. He took Jackson off Zantac and the anti-reflux formula to conduct the tests. Once again the probe didn't show anything but the scope revealed damage to the oesophagus and some minor spots on the stomach lining. Finally we had some answers! I recall feeling relieved but angry. My anger was at the doctors who had allowed my child to suffer, the doctors who blamed me and told me that we had a relationship problem, and at all the people who didn't believe us, including some friends and relatives. Dr Cameron then placed Jackson on a Neocate diet, as he suspected that intolerance to something was triggering the reflux, and monitored his progress through an allergy clinic linked with the R.C.H. Still there was no improvement but we felt that we were now on the right rack. He placed Jackson on Losec and things gradually got better, although he continued to posset quite a bit. Eventually Dr Cameron explained that he believed that Jackson had a very immature digestive system, that he may have had an earlier food intolerance and that he had silent reflux. The Losec was now managing the reflux and a further scope at six months illustrated its effectiveness in allowing the oesophagus to heal.

In the next six to twelve month things continued to improve. Although we suffered from a number of illnesses and continued to have some sleep problems, nothing was as bad as life before Losec. Jackson is now eighteen months old and is a very bright, happy, alert and busy toddler who loves his mummy and daddy. We weaned him off the Losec at fourteen months and we were thrilled to see little change in him. Sleep remains an issue as he requires very little, has poor sleep associations and continues to wake at the crack of dawn, and sleep very little during the day. He occasionally has refluxing episodes when teething and around immunisation times. Although the past eighteen months have been an enormous struggle with many ups and downs we are now reaping the rewards of a beautiful toddler. Finally we are getting our lives back together and there is a glimmer of hope that we may have another child, one day!

We have learnt so much from our experience and will be eternally grateful to DISA. Vanessa, Craig and Jackson Jennings