Rachel's Story

Part One

Rachel was a fairly unsettled baby right from the start. She cried more than the other babies in hospital but she also slept a lot and seemed fairly normal to me. I was not prepared for her first episode of prolonged screaming which happened when she was 11 days old. Things quickly became much worse and soon it seemed that she was crying all the time. If she fell asleep at the breast and I put her in her cradle she would be awake and crying within ten minutes. Her sleep was better at night although she usually woke up at least twice. I was convinced she had colic, although her crying was certainly not limited to certain times of the day, and I expected her to settle down by the time she reached 12 weeks.
The only way I could stop her crying was to take her out in the pram, and then she would start again as soon as we came back inside. I often spent most of the day out walking. She also liked to be held provided I kept standing and didn't try to sit down. However, neither of these methods worked every time, especially when she was really upset. Soon they stopped working altogether. I wondered how I would make it to 12 weeks.

Breast feeding had become a problem. She started to become a very fussy feeder, coming off the breast every few seconds. Often she would begin screaming after just a few seconds of sucking, throwing herself back and stiffening her body. I would quickly put a dummy in her mouth which helped to calm her down but it was impossible to continue the feed. Despite this she was putting on weight and thriving. She didn't have any other symptoms and looked very healthy. She didn't vomit or even posset very much.

Twelve weeks came and went with no improvement. My Maternal and Child Health nurse suggested that we go to a mothercraft hospital and I agreed because I wanted professionals to observe Rachel over time. During our 5 day stay I learned settling techniques, but they did not work on her at all. The staff there decided that she was in pain and it was probably gastric reflux. One of them gave me an article written by a parent whose baby had reflux and it sounded exactly like Rachel. I was dismayed to learn that this condition usually lasted for at least 12 months. They gave me a referral for a paediatrician and a bottle of Prepulsid.

The paediatrician increased the dose of Prepulsid, told me to give her half a teaspoon of Mylanta when she was irritable and suggested I start her on solid food. I asked him what he would do if this did not work and he said he would try her on phenobarbitone. This was not what I wanted to hear. I wanted an accurate diagnosis and advice on how to manage her condition. The Prepulsid didn't work and I didn't go back. Neither did the Mylanta, but I have since found out that one teaspoon would have been the correct dose for a baby Rachel's age. My GP was not in favour of having her tested for gastric reflux. He felt that these tests were too invasive and that, as she was gaining weight and otherwise thriving, I should simply keep on doing what I was doing if I possibly could. I was very confused about what to do and didn't feel there was anyone in the medical profession I could trust.

She started feeding less and less during the day so that soon a normal day would be one when she neither fed nor slept. She seemed to prefer to feed at night when she was half asleep and began a pattern of waking three times a night to be fed. I soon found that I could not get up three times every night without falling asleep in my chair, so I kept her in bed with me where I could feed her lying down. Soon she was waking to feed much more often and she was almost two before I managed to control this habit.

She disliked being handled in any way and I dreaded bath time which often set her off on a one or two hour screaming fit. I could not put her on the floor, especially on her tummy, which she hated. Putting her hat on before going out for a walk also had this effect. She spent most of the first ten months of her life in a little rocking chair when she was not being held. She was also very easily startled. When she was feeding she usually passed wind, which always made her cry and so the feed had to stop. Once, when visiting a friend for lunch, I was holding Rachel and someone next to us laughed loudly. She cried frantically for two hours. Eventually I rang my husband who was on holiday and he came and calmed her down. She was now settling more easily for him and seemed to take no comfort from me whatever.

She began to improve at the age of nine and a half months. This was also the time when she began to sit unsupported. She now took more interest in toys and I could leave her to amuse herself for short periods. She was quite slow in her development of all the gross motor skills and I have often wondered if this was due to her sitting in a chair for so many months when most babies were exercising on the floor.

By the age of 12 months she began to have days where she was happy and affectionate, interspersed with terrible temper tantrums. She also began to be very demanding and clingy towards me. At 24 months she still likes to breast feed for comfort and although I have just got her sleeping through the night in her cot, I still have to struggle to get her to sleep during the day. She also still likes my husband to hold her while he stands up when she is upset or sick.

The first months of her life were extremely difficult for me for several reasons: the breast refusal, my inability to comfort her and my disappointment at not being able to enjoy my baby were some. The fact that her condition had not been properly diagnosed caused me a lot of concern. I was constantly worried that there was something very seriously wrong with her.

Another thing was my own emotions, which were complicated and unpleasant. My baby was in pain and my job was to comfort her. However I found that I spent more time feeling sorry for myself than thinking about how she must be suffering. I often felt angry and resentful when she would start crying after I had spent hours trying to settle her down. Here I was holding my baby, something I had looked forward to so much during the pregnancy, and now I just wanted her to go to sleep so I could empty the dishwasher or brush my teeth. I felt guilty about feeling this way yet I seemed powerless to do anything about it. Many times I felt like screaming at her to shut up. I thought of all the other babies like her, both now and throughout history, whose mothers had less self control, and I felt frightened for them. I was grateful that my husband is patient and gentle.

The attitudes of other people also made life difficult. Although I explained to family and friends what was happening, it didn't really seem to sink in. Most of them couldn't relate to it at all and my feeling was that they thought I was having trouble adjusting to having a baby or I was being very negative about normal events such as a baby crying. They would give me advice such as how to settle a baby down to sleep and I forced myself to be polite and patient with them while really I felt hurt and insulted. It was a lonely time. Not only was I going through a tremendous ordeal, but I was not able to talk about it to most of the people I knew. The only person who really helped me was an ex-work colleague who had moved interstate. When she heard that I had had a baby she wrote me a letter of congratulations. In my reply I mentioned that Rachel had silent reflux and she wrote back immediately telling me that her son, who was several months older than Rachel, also had this condition. She was able to give me the support and encouragement I needed and we wrote to each other often. It was a relief to be able to speak honestly about what was happening without being told I was doing something wrong. This is the reason I am a volunteer with DISA. I know that being able to talk to someone who had been through the same thing is what kept me going.

Part Two

Rachel was not an easy toddler. She started throwing massive tantrums at about 12 months of age and was still doing it quite often at two and a half. She would fly into a rage about all kinds of things. For example, she hated me wearing a dressing gown or slippers and if I wouldn't take them off she'd bang her head on the nearest hard surface. She was constantly banging her head and always had a cluster of bruises on her forehead. She was also generally uncooperative and refused to wear warm clothes, have her hair or teeth brushed, get in the bath or get out of the bath once she was in. If we were going out I would have to allow ten minutes to get her into the car seat. Often it took much longer. She always woke up in a bad mood and we went to ridiculous lengths to avoid upsetting her. I know that many toddlers are unreasonable, but she seemed to be at the cutting edge of outrageous toddler behaviour. In addition to this she was still getting an ear infection with every cold and her colds always ended in a night time cough which would go on for weeks. People were always asking me if she had asthma. She was also having frequent 'night terrors', refused to go to sleep alone and often woke up during the night. It didn't occur to me that she may still have reflux. We thought it was just her personality.

It seemed to me that she had two personalities - sometimes she was happy and normal, but often she would rage around the house as if she were possessed by demons. My husband's nickname for her was The Maestro of Mayhem.

I read something in a 1999 edition of The Reflux Roller coaster, the newsletter of VISA in NSW, about reflux in older children and it was a revelation to me. It was a letter written by parent who'd had several children with reflux and she listed some of the symptoms of reflux in an otherwise healthy older child. I was surprised by how many Rachel has had - bad breath, a night cough, teeth grinding, fussy eating habits, sleep problems, behaviour difficulties and asthma-like symptoms. She also regurgitates stomach acid into her mouth quite frequently. I have spent years reading, thinking and talking to other parents about reflux before I found this out. I have had lots of professional help for Rachel's sleeping problems and was always told that I needed to set more limits. Nobody seemed to think that reflux was an issue. It has been a lot of work and the reason I am writing this now is because it might save someone else some time and effort.

By the time Rachel had turned six her behaviour was much more reasonable. The bad breath and ear infections had stopped, she was only getting a few colds a year and was no longer grinding her teeth at night. She was still taking between one and two hours to get to fall asleep and waking during the night, but there were no more night terrors. She was an extremely fussy eater and practically lived on milk, bread and dry biscuits. She was very fond of junk food and was eating a more limited diet then than she did as a toddler. She was also getting growing pains in her legs at night.

She is now seven and behaviour problems are a thing of the past. She recently decided that she no longer needed me to sit by her bed while she went to sleep and now falls asleep much more quickly and only occasionally wakes up during the night. Her diet is gradually expanding and the growing pains and regurgitation are getting less frequent. She is my pride and joy.