Anthony was my third child and after having a difficult time with my 2 daughters, I felt confident and relaxed about the thought of having another child.
Little did I know what was to come. It wasn’t long before Anthony was struggling with his feeds. He would drink and then gag and splutter, but because he was born with a floppy larynx (laryngomalacia), I just figured that was the problem. He also breathed extremely rapidly and this was also put down to the same problem (a bronchoscopy ultimately confirmed this diagnosis).
He fed frequently and even though I tried to stretch his feeds to 3 hours, nothing I did made any difference. He was also very unsettled at night time and I dreaded the nights. I’d feed him and try to put him back to bed very gently, trying to ensure he never burped. I knew if he did, it would take hours to settle him. At that stage I didn’t understand why, but I was already desperate for sleep.
At eleven weeks, I woke to the sound of him choking during the night. Even after I picked him up and cleared his airway, his breathing was very laboured and noisy (stridor) so we called an ambulance. He was admitted to hospital with a diagnosis of croup but it was changed to gastro-oesophageal reflux disease (GORD) when a Barium swallow was performed. Thankfully he refluxed beautifully, though I didn’t know at that stage that a Ba swallow was unreliable in diagnosing reflux.
He was started on a motility medication (widely used at the time) and sent home, with us still not knowing much about silent reflux. It was to be a very steep learning curve. It was a light bulb moment though – both girls had had silent reflux as babies. It explained a lot, but we still thought at the time that they had both grown out of it. After all, we thought that’s what babies did.
The days and nights continued to worsen, so Zantac was added to his medications. It tasted terrible so I wasn’t surprised he fought it. It seemed to help a little but then the ‘croup’ would return. We soon learned that this signalled his reflux was spiralling out of control, and the Zantac was increased every 2 weeks.
I wasn’t coping with him not sleeping well, crying all the time and feeding almost constantly. I had no idea about simple management strategies or where to get help. I thought I should be coping – after all, he was my third child, and I considered myself a capable person. Additionally, I was a registered nurse. It was hard to cope on almost no sleep though. I would tend to him at least 12 times a night, and at its worst, the average was more like 20. It was a nightmare and we eventually got a referral to a paediatric gastroenterologist (paed gastro). After the appointment, I remember crying from sheer relief. He seemed to understand the issues, I was being listened to, and I had hope. At five months Anthony underwent his first endoscopy, which showed oesophagitis. Losec was added to his medications and we stayed in hospital for several days to give me a break. I simply wasn’t coping with a reflux baby and 2 older (still refluxing) children to care for.
Losec helped quite a lot, but despite increasing the dose several times, he continued to be irritable and he still wanted to comfort feed. Even so, he would cry before attaching to the breast and would only suck for a short time before pulling off. I had no idea at the time that that was typical reflux behaviour. All I knew was that I was beginning to dread breastfeeding (something I had previously loved), and it gave neither of us any pleasure.
On medical advice, we also gave him a spoonful of thickened formula, mixed with breastmilk following each breastfeed. It did seem to help lessen the severity of his choking but never stopped his refluxing. We also raised the head of his cot (this is no longer recommended), but all that achieved was a baby who ended up upside down in the bed. Positioning devices (also no longer recommended) did not help, and he could not lie on his tummy even for short times as he could not breathe. We tried chiropractors, homeopaths and naturopaths, all to no avail.
By nine months, we were all miserable, and sleep was virtually non-existent. We spent time in a sleep centre to help get him into a routine, which seemed to help, but they also noted his irritability and suggested we return another time to deal with that too. I was made to feel like it was something I could somehow control.
We were told by the doctors that the only other step we could take was surgery, but if we could hold out until he was 2 years old, he would grow out of his reflux making surgery unnecessary. Of course, given this advice, we chose to continue doing the best we could, and we tried to cope, though I often wonder what the advice would have been if we had known then that neither of our girls had grown out of their reflux.
Some days were better than others, but Anthony still spent most of his days crying. If we went out or had visitors though, he would be distracted so of course nobody could see what our lives were really like. If we did try to talk about the issues we were told that all children cry, so we stopped talking about our problems and just tried to survive. Thank goodness for RISA!
While he continued to ask for food often, and I began to dread hearing “I’m hungry”, he would rarely take more than a bite before saying he was full. He also stopped eating most foods, so by the time he was 2 years old, he was really only drinking milk and eating soggy cereal. Everything else he associated with pain so he stopped eating it. We eventually saw a speech therapist at the children’s hospital. She told me he did not know how to chew properly, and that he had missed that stage of his development due to reflux. She taught him how to move the food around in his mouth and use his back teeth to chew. She also helped him to learn that he could eat without pain, and suggested we use a star chart to encourage him to try different foods. This was successful; he got to choose how the chart was decorated, and he (sometimes) enjoyed earning a star if he ate 5 spoonfuls of a particular food.
This speech therapist also told me Anthony had poor chin awareness because he dribbled a lot, and his clothes were always wet (something I now know was due to reflux). She had wanted me to do ‘chin awareness’ activities twice a day to help him learn, though this was something I could not manage as I was not coping at all by this stage. I was desperately short of sleep, had 3 refluxing children (and a husband) to care for, and the paed gastro had already recommended a fundoplication (anti-reflux surgery) for Anthony. A repeat endoscopy had shown continued oesophagitis despite high medication doses, and by this time he was over the age of 2 years (and hence not likely to grow out off his reflux). His asthma was also a constant issue.
Anthony was displaying a lot of pain behaviours too – apart from the constant irritability, the lack of sleep and profuse (sometimes blood stained) dribbling, he also banged his head on hard surfaces, and obsessively chewed his nails and the skin around his nails. He was also aggressive, and never played. This was all thought to be behavioural until his GP prescribed strong analgaesics and we discovered we had an extremely sweet, placid little boy (for a short time).
Many blood tests had confirmed iron deficiency anaemia as well, and he had been in hospital several times for respiratory issues. In one of these admissions we also discovered that his oxygen levels dropped while he slept. He would also often turn blue.
Despite all this, our speech therapist sat me down at one point and told me that because Anthony no longer vomited (as a silent refluxer he had never done this), his reflux was no longer an issue and therefore, the reason for his eating refusal/difficulties was a control issue. She said that I needed to take back control, and because I obviously was not capable of doing this, she suggested I needed help and recommended I saw a psychologist. I was devastated. A health professional responsible for treating my child’s reflux related issues had very limited knowledge of reflux. I was gobsmacked, and almost speechless. All I could manage to get out was if Anthony no longer had reflux, why did his specialist want to perform a fundoplication to control his reflux? She had no answer, and it was her turn to sit there open-mouthed. I got up and left.
In fact, because of Anthony’s respiratory issues (needing up to 9 days of oral steroids every month), the paed gastro had recommended a fundo earlier rather than later. However, Anthony’s respiratory specialist advised us against a fundo, so we delayed it.
Eventually though, despite our fears, we felt we had no other choice. We knew we simply could not continue on as we were. Thankfully I was able to talk to parents through RISA Inc and ask loads of questions about the fundo. I also found RISA’s fundo booklet for members helpful.
Anthony was close to three years of age when he eventually had his fundo, and although the recovery period was difficult, the difference in our child was incredible. It was like night and day and his true nature shone. He was placid, happy, slept well and learned to play. He stopped all those pain behaviours too so there was no more head banging, no more aggression, and no more nail/skin biting. No more dribbling either and I wish the fundo had been done much sooner.
Anthony is now 15 years old and is a remarkable, intelligent young man. He does still need Losec, and his asthma, though far better controlled than before the fundo, is still an issue. He also suffers motion sickness, which is reflux related, and I’ve learned that all three of my children have motility issues. His journey though, provided answers that my girls needed, and despite the pain of knowing what he has gone through, we have come through it as a family.
Position: RISA Stateswoman, Author of Reflux Reality: A Guide for Families!!
Glenda lives in Brisbane and has been a RISA member since 1996.
Contact Glenda on the RISA forums – username: Glenda