Charlotte was born at 37 weeks and was tiny – she wasn’t on the weight charts and barely on the height chart. Unsurprisingly, the neonatologist / paediatrician whacked a nasal gastric tube (NGT) in her straight away and started milk feeds. My milk hadn’t come in as she had been induced so sustenance for this tiny little girl was required quickly. The problem was, she never really fed well. She lost weight (as they all do), but as soon as the tube was taken out, she would lose weight so the tube would be replaced. This was the pattern for the first month of her life. I watched other parents come and go out of the Special Care Unit and eventually, though the pattern didn’t really break, we were allowed to go home because Christmas was just around the corner and the paediatrician took pity on us. Even in the Special Care Unit though the signs were there. She could projectile poo across the nursery. She was the only kid who required a mop and bucket at change time. And no one could feed her other than by tube. Every lactation consultant had a go at getting her to latch and she’d get on but pull off pretty quickly.

Fortunately, I have an experienced reflux family. It was Christmas Day and we had been out of hospital a week when we visited my sister and brother-in-law. My sister and brother-in-law held Charlotte, felt her arch like their son had (my nephew had been a very sick little reflux boy), looked at each other and told me to get in contact with the paediatrician pretty quickly. They said it wasn’t just a normal unsettled baby and they thought it probably wasn’t just garden-variety reflux either. Having raised an exorcist child, they were in a position to know. So began my ridiculously protracted relationship via text with the paediatrician. He would leave scripts for me to collect to try various medications or formulae with her. He was consulting with the paediatric gastroenterologist (or ‘gastro’, who still sees my nephew) about her from about 6 weeks. We had access to excellent care from very early on because we had family history and therefore connections to the right specialists. Thank God.

She was classified “failure to thrive” (FTT) pretty much from the word go. We were fortunate though to be under great care and we were referred to the Feeding Clinic at Sydney Children’s Hospital (SCH) Randwick by the time she was 4 months old. We saw the gastro for the first time a few weeks before that. This meant that though we had a severely ill child, we had access to great services and help very early. I guess this is the story of what happens when a severely ill child gets the help they need when they need it. It’s in stark contrast to what usually happens. Charlotte underwent testing to determine that her swallow was normal (modified barium swallow) and various techniques were used to try and get her to eat more or to fortify her intake (boost the calories) so we were getting as much into her as we possibly could. No matter what though, she was a very sick little girl who had to protect her airways every time her stomach contents came back up, which was pretty much constantly. She consequently ate very little despite being offered food and taking tiny sips almost all the time she was awake. And trying to get her to sleep was almost impossible. She was in too much pain and discomfort to sleep for any more than about 45 minutes at a time and getting her to that 45 minutes took a minimum of 45 minutes, usually longer – often all through the night.

On top of this she had other gastroenterological issues – an elongated and kinked bowel that didn’t work well without significant laxative assistance (well in excess of what an adult would take for a baby who was utterly tiny). And she would empty her bowels frequently and in copious volume. If she didn’t she was in excruciating pain. So on top of the constant attempts at getting her to feed or “practice feeding”, and the constant settling to sleep, my time was consumed with changing and cleaning copious amounts of clothes, nappies, car seat covers, change table covers, bed clothes, carpets – you name it. I was constantly cleaning up poo. Literally. I actually don’t know how we survived it.

A cold (or bronchiolitis) at 6 months was the straw that broke the camel’s back. She stopped feeding altogether. She projectile vomited constantly – usually she was a “silent” refluxer. (i.e. you could see her choking and gagging as it came back up but not forcefully enough or in enough volume to spew out her mouth. Biopsies from her airways later proved she was constantly aspirating, or breathing in, stomach content). At her worst, in hospital, she’d stopped feeding completely – we were admitted for a week due to dehydration. We were discharged at a daily oral intake of 50ml per day. I can’t underline enough the stress that it takes on parents who are constantly trying to get their child to eat or drink enough just to stay alive… quite aside from the fact that these children never rest properly because lying down means they reflux more. So parents are already exhausted before they spend all day trying to get the child to eat the bare minimum needed to keep them alive.

The week after, her intake had barely improved. We were admitted by the paediatric gastro into the private hospital for the insertion of a nasal gastric tube (NGT). We stayed for the best part of a week while her body acclimatised to it and I learned how to feed her through a tube. I also had to learn how to use the pump that she would need to be hooked up to overnight to very slowly drip feed her while she slept. During that time she actually lost weight. This was because her body was so malnourished that she was shedding toxins before she could absorb nutrients. She did start to gain weight in the days following.

But what we further discovered was that she was continually choking when we gave her feeds all at once through the feeding tube (called a bolus feed). At first you’re taught to try and get the child to mimic the volume of a normal feed by slowly feeding the amount you would usually feed through a bottle. But she couldn’t take it. Slowly, it became clear that she couldn’t tolerate much more than a drip feed at any time of the day. She was constantly aspirating stomach content and the rate of feed she could tolerate through the pump was also so low that in order to get anywhere near the amount she needed to get every day, the pump needed to run around the clock. So I had an 8 month old who was permanently attached to a tube and a pump (which is a cumbersome device). This entailed carrying around clasps to attach the pump, IV-style, to a pram or the car seat; carrying adequate amounts of a few different types of tape to be able to keep the tube attached to her face without it coming out; carrying different types of pump tubing and bottles in a backpack that could never be further away from her than the length of the tube – an interesting logistical proposition with a crawling or toddling child.

Also at around 8 months, her lungs had cleared up enough for the anaesthesiologist to agree to put her under a general anaesthetic so they could see what was happening inside her with a gastroscopy. A massive hiatus hernia was discovered. This is where the top of the stomach is herniated up through the sphincter that would usually hold the stomach closed so it was permanently open. She would require surgery to repair it (called, ‘fundoplication’). There is only one surgeon in NSW who does this surgery laparoscopically and he’s in high demand for the range of experienced and emergency surgeries he can perform. So despite the difficulty of our situation, her tube dependency and proven constant aspiration and the need to also insert a feeding button into her stomach so she wouldn’t need to have the tube down her nose and throat anymore, we were still required to wait until just after her 1st birthday – and even then we were lucky to be scheduled for surgery before Christmas. This may seem reasonably quick and in retrospect I understand that it was, but 4 months with a child with deteriorating symptoms like hers, was some of the worst time I’ve ever experienced.

During this whole time, we still saw the wonderful team, including a paediatric speech pathologist, at the Feeding Clinic SCH who helped us. They taught us how to keep trying different foods with her. They worked with the food restrictions we were placed on – no dairy, no soy, no gluten. They gave us lots of strategies and options and shared the emotional journey and were great in trying to support decisions to have her scheduled for surgery – not inappropriately but it was obvious that no further feeding progress could be achieved while she was continually aspirating. None-the-less, Charlotte still managed to play with food and we got her to a place where she was no longer scared of it. With the speech pathologist’s support we slowly reintroduced her to a spoon (she was terrified of them as she associated it with pain) and this picture of her with avocado mushed all over her face (she hadn’t actually eaten any) was her first pin-up photo – as poster girl for “its possible to be happy with a feeding tube in” used by the speech pathologists in their own presentations on the vagaries of paediatric feeding. Because of the speech pathologist and the rest of the Feeding Clinic team she was able to maintain an ability to chew, move food around her mouth and was still ok to feel (if not eat) a variety of textures. We also started seeing a private speech pathologist to supplement this support just before her surgery as our public speech pathologist was soon to go on maternity leave.

The difference in Charlotte’s feeding after surgery was astonishing. Because we had been able to maintain her desire to eat and drink prior to surgery through regular speech pathology even though she hadn’t been able to eat, as soon as she was alert enough after surgery, she wanted to eat! Within 24 hours of surgery she was grabbing for my water bottle and trying to drink from her sippy cup. We had to try and slow her down! (The surgery recovery period requires that they only have liquids for a certain time, only purees for a few weeks after that and very, very slowly move up to soft solid food over about 6 weeks). It’s pretty unusual for a child without neurological impairment to require this kind of surgery by the age of one, and when they do it usually comes with a child who is scared witless of food and drink. The surgeon was extremely surprised to find a child who wanted to eat and drink. A week after the surgery, only just at home, she scoffed a pouch of puree spaghetti bolognese. While encouraging, it was revolting. Her stomach was so small and wasted from lack of food volume for so many months that it basically came straight back out the stoma (hole in her stomach where the feeding button had been placed).

So we needed to slow her down more. It certainly wasn’t plain sailing from there. She didn’t have the feeding skill to just pick up where another child who’d had normal exposure to chewing and feeding skills would have been able to. She didn’t have the strength in her jaw muscles, despite all the therapy, to be able to chew enough to swallow enough to sustain herself. It would literally take her almost 30 minutes to chew a 1cm square piece of sandwich – and then swallow it. So tube feeding was required, by pump, for considerable parts of the day and all of the night for a while. And plenty of feeding therapy. It was the speech pathologists who helped us work out things like how long to stop the pump for so she would be hungry enough to eat while still getting enough nutrients to not send her backward. Dieticians would also pitch in with that – but their job is to figure out the baseline quantity. It’s the speech pathologists who help you work out the logistics of how to actually do that. It’s more complicated than you might think and you’re playing around with sustaining the life of your own child. It’s emotionally charged so having an experienced professional help you work out the nuts and bolts is imperative.

By this time, our team at SCH had changed. The experienced staff we had been seeing were no longer available (maternity leave and resignation) so we were now seeing very junior staff. To be frank, I knew more about what to do to help my child by this time than they did. We continued seeing our private speech pathologist to maintain growth in her skills. Even living in Sydney, there are only a very few speech pathologists specialising in paediatric feeding available. At last count there were three in private practice and a few at Randwick and Westmead Children’s Hospitals who are underfunded, overworked and because there are very few trained in this specialised area, quite a few with less experience than you might think.

Over time, as Charlotte’s skills developed, we were given different exercises to encourage and extend her feeding skills. This wasn’t without difficulty. She resisted certain textures and lots of different types of foods while at the same time wanting to try foods that could be quite dangerous to a child with this kind of stomach surgery. But within 9 months of surgery we were able to stop pump feeding her overnight because she was eating enough to sustain herself. Weight was still an issue but she wasn’t losing. So when the button fell out around 3 months later, we were allowed to leave it out and allow the stoma to close over. And that was the end of tube feeding. Most other families in our position have a much longer experience of tube feeding. Without access to therapists to help teach you how to teach your child to eat, tube feeding is a long-term proposition. In our case, it took less than a year and that is remarkable. We were very lucky to be in a position to pursue access to the therapists we knew would help Charlotte recover as quickly as she could. I can’t stress strongly enough how much speech pathology helped us in this journey or how much more quickly we recovered than other families. It was two years of our lives – but for many other families, once a feeding button goes in, it’s a long-term proposition to get it taken out. Kids frequently start school still being tube fed for concerns similar to Charlotte’s. Though we did access a lot of services during her first year, because the service was so good, we ended up consuming far fewer health services during her second year and almost none now.

Charlotte is now a very normal 3 year old. You would never know the journey she’s been on. She still carries a couple of legacies in terms of medical management but by comparison, very few. We only access SCH Randwick for a semi-regular growth-check which I imagine will soon conclude too. We still see her private paediatric gastroenterologist bi-annually which will be a long term arrangement to manage her medication regime. But to look at her now, you would never know.