Charlotte is now 2 years old and it’s been quite a couple of years. Charlotte was small all the way through the pregnancy (3rd percentile) and eventually stopped growing around 37 weeks so she was induced. She went straight into the Special Care Nursery, had oxygen for a bit, a nasal gastric tube inserted and they started her on formula feeds. And so it began.
She never fed properly. At first it was probably because she was really tiny and she was just too small to feed. But right from the start she burped and farted like Homer Simpson. It was pretty funny to hear those sounds coming out of such a small person. She pooed like a machine. She could literally poo across the nursery. The only child in there who required a mop and bucket at nappy change time ‐ I’m not kidding. In retrospect it was pretty obvious she had some serious issues. But of course, no one around me had any idea.
She was almost impossible to get on the breast. She pulled off and arched from pretty early on. Her weight continued to fluctuate with the feeding tube going in and out til finally they let us out of the hospital after a month. She never settled at home. She didn’t put on weight. She was put on reflux drugs and prescription formulas all of which helped a bit but none of it fixed the problems. She still slept poorly and rarely, was clearly uncomfortable and in pain. The bowel issues never subsided. Suffice to say I usually changed her clothes more than 10 times a day and it was pretty ugly.
She had her first bout of bronchiolitis at 6 months which had seen us spend a week in hospital and her eating cease completely. She was horribly malnourished so an nasal feeding tube went down soon after at 7 mths old. She had to be fed by pump overnight and tube fed manually during the day.
At 8 mths old her chest infection had cleared so she could withstand a general anaesthetic and endoscope was performed (a small camera put down the throat) to see what was going on with her stomach and gut. The paediatric gastroenterologist had said beforehand that he thought it likely he’d find a hiatus hernia given she still wasn’t eating and because she was still refluxing badly he wanted to try her on jejunal (NJ) feeds where the feeding tube passes through the stomach to the second part of the bowel. He did find a large hiatus hernia and we were referred to a surgeon.
In the mean time, the jejunal feeds were a whole new world of pain. We started 24 hour continuous feeding on the pump and she didn’t tolerate much beyond a very low rate but she did stop refluxing. We went back to gastric feeds a few weeks later but pretty soon she started refluxing & choking so nastily I was running the gastric feeds on the lowest possible rate (read: drip feed) for 24 hours a day in order to get anywhere near enough food into her. The biopsies from the scope showed that she was also aspirating significantly – food from her stomach was regularly making its way back up and over into her lungs. Few people realise that gastro-intestinal reflux is linked to regular chest infections, asthma and a whole swag of ENT issues.
The surgeon was wonderful. He said that a gastrostomy (button placed into the tummy to replace the nasal feeding tube) on its own wouldn’t solve the problem and that he was happy to do the anti-reflux surgery laproscopically. So then we waited to get on a list. And used a lot of paracetamol. The older she got, the worse it got. Her whole first year was hard going (it still is to be honest) but the few weeks before the surgery were particularly difficult.
Charlotte was operated on a few weeks after her first birthday. The surgery was successful. After the surgery she started to actually eat some food and drink some milk and water.
But the bottom line is that post‐surgery, I’ve got a kid who is sleeping better, was eating better and drinking better than she ever had before. She didn’t eat independently until about 21 mths old. She had to re-learn how to eat because she missed so much vital development having a tube stuck down her nose for the best part of a year. She had to re-learn how to chew properly and was still scared of food for quite a while.
For a long time she was topped up by tube at night and we worked with speech therapists, dieticians, paediatricians and our paediatric gastoenterologist to get her to the point of being able to eat enough sustain herself without needing tube top ups. The struggle to teach her to eat a normal range and quantity of foods will be a long one I think. But at least she sleeps and she’s not in pain.
She is still medicated. We stopped needing to top her up by tube at around 21 months. At around 2 yrs old Charlotte decided that she didn’t need the gastrostomy (surgically inserted button) in her tummy and more an pulled it out. (Eeeww!) With doctor’s permission, we left it out and it’s healed nicely with no more need for tube feeding! She now eats independently and is growing reasonably well. To look at her now, you’d never know what a sick child she was (and would be still without medication and surgery).
During all this time I received wonderful support from other mothers through the Reflux Infants Support Association who’d been through similar things. And I’m now proud to be its President.
Paediatric gastroenterology is a relatively new discipline and much medical education hasn’t caught up. As a result too many GPs, nurses, midwives and paediatricians have very little idea about gut issues.
Reflux in infants is common. General estimates put it at between 10 & 20% of infants. Conservatively, gastro reflux disease will affect 8% of children and more infants.
Living with an infant with reflux is extremely hard going and people who haven’t done it often don’t get it. It is not uncommon to get an average of about 4 hours sleep a night – usually in stints of one hour. There’s a reason they use sleep deprivation as torture.
But there are simple things you can do to help babies who are in pain. And their families. Unfortunately though lots of mothers are fobbed off and told “all babies cry”, “all babies have trouble sleeping” or “it’s just colic”. Premature babies are far more likely to have reflux (90%) and very few mothers of premmie babies are told about it. And the incidence of prematurity in Australia is rising. Also, about 2% of infants have cows milk protein intolerance (CMPI) and about half of those are also soy protein intolerant. Babies who have CMPI also reflux but respond to a different approach to improving their health.
I strongly believe babies should be screened for gastro-oesophageal reflux at the various routine health checks. There needs to be some concerted research into the incidence of infant and child reflux among the general & premature populations and its links to post-natal depression, shaken baby syndrome and sudden infant death syndrome.
I think that the likely rate of undiagnosed reflux contributes to the rate of post natal depression and contributes to some babies being harmed. I also think that leaving a child who cannot otherwise be comforted & clearly in pain to “cry it out” may be well-intentioned but can be dangerous.
So I’m passionate about making this better. I hope my story helps people understand that gastro-oesophageal reflux in babies is real and serious. Charlotte’s story is unusual in its severity. Most are not so severe nor so long lasting. But is in no way the most severe I know about. It can be life threatening and more needs to be known about it generally. In the mean time, there’s parent support groups like RISA Inc.
Position: RISA President, Newsletter Editor, Co-ordinator Advocacy Sub‐Committee
Jo lives in Sydney and has been a RISA member since mid 2011.
Contact Jo on the RISA forums – username: JoM