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(First published in Your Baby issue 210, May/Jun 2014)
Our son Tristan was born without complication on 12 November 2009. He scored well on his Apgar test, and was 3,49kg and 50cm long. For the first four weeks Tristan was breastfed. It started out smoothly with him latching, eating well and putting on above average weight. As time progressed though, it started to get to a point where I found that I was feeding hourly and each feed was somewhat of a frantic episode. from being a healthy, happily eating baby, I started to battle to get Tristan to latch and when I did, he would often scream and arch his back so badly that it would take his breath away.
I began to think that my milk was the issue, which I raised with our paediatrician at Tristan’s six-week check-up. I told the doctor that Tristan was displaying colic-like symptoms. Feeding times were becoming progressively more chaotic and I felt that Tristan did not want to eat, irrespective of how hungry he was.
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His response was that “all kids are a guessing game” and that as Tristan was a healthy weight, we should put our concerns down to being new parents. The only advice we did receive was to dry up my milk and try hypoallergenic formula milk as an alternative. This is when the true nightmare started.
Downhill from there
For the next four weeks we desperately tried every formula, bottle, teat, colic treatment and old wives’ tale available to get Tristan to eat. He hated the bottle so much that we even tried spoon-feeding him formula, a few millilitres at a time, for hours on end with little result. Our overwhelming feeling was that this was beyond colic and more the case that Tristan was forcefully starving himself.
We took him from paediatricians to GPs, nurses and midwives in an attempt to find answers or advice. Despite our concerns, we were repeatedly told that although he was not thriving, he was a healthy weight and that it was medically impossible for a baby to starve itself, as even in the most severe reflux and colic cases, kids will always consume just enough to keep themselves alive.
I began to feel that I was the one at fault, and put the problem down to being an awful mother. I would see babies guzzling at their mother’s breasts or bottles, and could not understand why Tristan did not do the same. He was a happy little boybut every time he saw a bottle coming he would immediately start to scream. He was obviously undernourished, and eventually we had to hold him down and force-feed him.
This was so traumatic that it would take me an hour to calm him down after just 20ml. This was our experience at every feed. At this point he was taking in roughly 100ml on a good day. The formula tin’s daily recommendation was 750ml and the Red Cross’ absolute minimum daily intake for survival, based on 10ml of liquid per kg of weight, was 60ml.
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As new parents, even among endless advice, we felt very alone and completely helpless as we watched our son slowly starve himself. Finally, some answers The turning point came when after a few days of force-feeding, Tristan absolutely refused to drink. After 14 hours of zero milk and fearing for his life, we took him to the hospital. After an assessment, it was determined that he was extremely dehydrated and he was admitted to the paediatric ward.
The paediatrician on call spent four hours with us, running several tests and observations. This was the first time we had been taken seriously and she was extremely interested and concerned as we told her our story. She was also perplexed as to why a small baby would refuse food altogether, intentionally starving himself. Tristan was not yet underweight, but he had not gained weight in several weeks. He weighed 6,2kg at almost three months.
Tristan was immediately put on fluids via a drip in his arm. Despite dehydration and near renal failure, his only gripe was that the bandage and plaster holding in his drip, had now all but buried his favourite thumb. After two days of tests and a barrage of procedures, he was diagnosed with silent reflux and asthma.
Reflux, traditionally associated with babies spitting up, can also take on a silent form when babies spit up, but do not throw up. In these cases, milk repeatedly travels up and down the oesophagus, often with parents being completely unaware.
This was a very trying time as the NICU has strict visiting hours and parents are not allowed to sleep over. This anguish was amplified by the seasoned nurses, not having seen a child starve himself and believing we were simply incompetent first-time parents, insisting on trying to bottle-feed Tristan when we were not in the ward. We would hear his screams from the waiting room and after forcing our way back in, would find him covered in vomit and traumatised.
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During this time, and in an effort to find the cause, the paed called in four more paediatricians, an ear, nose and throat specialist, a renowned paediatric surgeon, the head of the radiology department and a speech therapist to consult on the case. Tristan had rotating drips in his head, chest, wrists and feet as his small veins kept collapsing. He was also put through further tests and scans.
The consulting doctors did not believe that he was starving himself and we ultimately agreed to remove the drips and, while under observation, dehydrate him forcefully to see if he would willingly take on fluids. As a result he did not eat for over 72 hours. Tristan was eventually put under anaesthetic and the paediatric surgeon carried out a gastroscopy to check his oesophagus and stomach.
Aside from a slightly inflamed oesophagus, everything was normal. To hear that everything was fine was a surreal experience. Most parents pray for a normal test result, but we were desperate for an answer, irrespective of what that answer might be. Following several weeks, all of the tests, all of the results and a massive amount of online research by my husband, it was concluded that Tristan was suffering from gastroesophageal reflux disease (GERD).
GERD is described as “a chronic symptom of mucosal damage caused by stomach acid coming up from the stomach into the oesophagus”. In Tristan’s extreme case, it was the perfect storm of reflux – very slow digestion, stomach acidity ten times higher than the norm, relaxation of the lower oesophageal sphincter (which normally holds the top of the stomach closed) and impaired expulsion of gastric reflux (the silent reflux I mentioned earlier). Basically, from an early age he had been silently refluxing highly acidic stomach contents causing severe burning of his oesophagus.
This burning and scarring was picked up as “just” inflammation at the gastroscopy because Tristan had been fed intravenously for the previous few weeks, providing time for his oesophagus to begin to heal. While we finally had the answers we were so desperately looking for, and with Tristan now on a variety of medications to treat the various conditions, the ongoing burning of his oesophagus meant that Tristan had now developed a complete oral aversion.
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The association between fluids and burning had been made, and despite his treatment, he now completely refused to drink based on the fear of a repeat episode. He was willing to starve himself to avoid further pain and discomfort. Despite repeat visits from the speech therapist, who deals with teaching babies to latch, suck and drink, we had no such luck.
The association between fluids and burning had been made, and despite his treatment, he now completely refused to drink based on the fear of a repeat episode. He was willing to starve himself to avoid further pain and discomfort. Despite repeat visits from the speech therapist, who deals with teaching babies to latch, suck and drink, we had no such luck.
A big breakthrough
The traditional answer to this problem is a nasogastric tube. This is a tube that is slipped through a nostril, past the throat and into the stomach, which allows kids to be syringe-fed. While this is a phenomenal device, the long-term effects of these tubes is that many children become tube reliant and don’t learn to eat normally, which in turn affects speech and other development.
As these tubes are often a medium-term solution, they can also escalate to a tube being surgically placed into the stomach or the intestinal tract through an opening made on the outside of the abdomen. In a last ditch effort to avoid the nasogastric tube, now ordered and sitting next to his hospital bed, we took a chance and tried feeding him solids. Amazingly, at just over three months of age, Tristan started eating puréed food. His aversion was to the bottle and liquids, and he seemed much more comfortable on solids. We started Tristan off on both apple purée and very wet porridge due to their highliquid content and low acidity.
This diet, combined with jaw exercises to encourage eating, worked well. After more research, we also discovered a technique called “dream feeding”. This approach involved bottle-feeding him while he slept. This allowed us to reintroduce the bottle at night, and as long as he did not wake up, he would happily take up to 250ml of milk while being fed slightly elevated.
Read: New moms: How to cope with colic
Finally, on 24 March 2010, we were released from the NICU. Still a learning curve At this stage, Tristan was on a combination of medication he would remain on until he was two years old. In addition, he was also on numerous vitamin and iron tablets and syrups to ensure his development and supplement the nutrition missing from his milk-free diet. The dream feeding unfortunately only lasted a few weeks before he cottoned onto what we were up to.
From this point onwards, until over the age of one, Tristan would need to receive 100 percent of his fluids from the solids he ate. This challenge saw us seeking out the help of a paediatric dietician who put Tristan on a diet which would literally need to keep him alive. We soon came to learn that feeding him as upright as possible would go a long way to reduce his silent reflux. Based on his immature stomach, Tristan would struggle to keep these solids down and would throw up just about everything at each mealtime.
Based on the fact that his solids constituted all of his fluid intake, and dehydration would result in renal failure, we would have to persevere, often leading to mealtimes taking hours and merging
into one another. As a result of his severe reflux, Tristan also suffered from numerous chest infections, sinus issues and ear problems. Repeated bladder infections (from his liquid-free diet) had caused sores and scarring under his foreskin, fusing it to the head of thepenis. This condition, called phimosis, resulted in him needing to be circumcised at the age of two. Another effect was under-development of the tongue, a direct result of not having used this muscle to suck on a nipple or teat. This has seen him struggling to pronounce several sounds, especially those that require lifting his tongue to his palate.
Looking to the future
Fortunately, as with many reflux related cases, age cured many of his conditions as his lower oesophageal sphincter strengthened and his ability to eat solids and sit and eat upright improved. With much patience and through a lot of play, we eventually managed to re-teach Tristan to drink, and in doing so, overcome his oral aversion.
He now happily drinks, although even now, at four years, he requires constant reminding. Today we laugh at the judging looks parents give us at parties as we happily let Tristan guzzle down Coke Zero, his new favourite, when in reality we are just glad to see him drinking anything at all.
Does your baby suffer from silent reflux? Has your baby been diagnosed with GERD? Send us your stories and comments to chatback@parent24.com and we may share your story. Should you wish to remain anonymous, please let us know.
