Ruairí's Story

Whilst on holiday in Spain, I went into spontaneous labour with my twins at 28+2 weeks, I flew back to the UK where I was held in labour for 10 days. My twins were born at 1.1kg and 1.25kgs. We were told they would spend close to 11 weeks in the Neonatal Unit but 5 weeks later, we were surprised to be told they would be ready to come home. My son, Ruairí, had been bottle feeding from 31 weeks old and my daughter, Effie, 32.5 weeks old. Looking back now, this seems way too early, their amounts of milk were increasing almost daily and by the time we left the Neonatal Unit with two babies both weighing under 1.8kg feeding every 4 hours and taking up to 60ml... with what I know now, I know that is far too much milk. We were over feeding both babies, Effie ended up being hospitalised as she was not digesting the milk and was inflating in front of our eyes, but Ruairí seemed fine. By 37 weeks he was taking up to 100ml per feed and was growing well. They got to due date and both were very healthy weights, my son had reached the 4kg mark reaching the 75th centile in his weight.  

It was at due date that our issues started to raise concerns. My son had started to refuse his vitamins and iron through a teat and a syringe, Ruairí also started to vomit during, after and between feeds. Over the following 6 weeks we made 5 Accident & Emergency visits due to his dehydration, projectile vomiting, severe weight loss and refusal of feeds. An ultrasound showed up that he had Pyloric Stenosis-we were overjoyed to have a cause of our problems. He was operated on and at this point was registering as being on the 25th centile for his weight. Post-surgery his feeds were introduced but the vomiting continued, so we were told that unfortunately it appeared as though he had GORD as well. Over the following months he was prescribed a number of medications which failed to make a difference. He was also treated as though he had CMPA but this was ruled out after 4 weeks of different hydrolysed and amino based feeds. The Ranitidine changed nothing for us and the dissolvable Omeprazole tablets caused so much distress, he was gagging and coughing at the sight of the syringe or teat being used to administer it. 

At his two-month post leaving the Neonatal Unit appointment his consultant suggested moving on to early weaning, this was when he was 1 month adjusted/corrected-apparently premature babies should be weaned 4-6 months from birth not from due date due to a lack of iron, magnesium and other vitamins. Trying to sit one-month old babies in high chair seats was a real challenge, they hated it and there was obviously no luck with the food. We tried every day for a month without luck. This pressure will have done a lot of damage to Ruairí’s relationship with food-which was already very poor. 

He continued to lose weight and he was below the 9th Centile by 3 months old. We returned to Accident & Emergency after two whole days of refusal of milk and severe dehydration. This is when the most Senior Consultant suggested after an Upper GI study and a negative test for Helicobacter pylori that we try Omeprazole solution/liquid in his milk to get it into him, though this seemed more sensible than the tablets, he was not accepting milk. We were also put under the supervision of a Speech & Language therapist, Occupational therapist and a dietician, who changed Ruairí’s milk to a high calorie feed (100 cal per 100ml) he had previously been fed with my expressed milk. The challenge continued. 

Through this period, we were using every sort of ‘pressure’ or ‘trick’ under the sun to get him to feed, we would feed him with the television right in his face, blaring music out, singing to him, bouncing him, placing the hairdryer on the back of his head and blowing in his face. We could never sit in the same place to feed him, he simply was becoming impossible to feed. My husband had taken to feeding him in the shower! His weight loss continued, and he was failing to thrive. By 5 months corrected after a pH study, it was deemed necessary to have an NG tube fitted. However, in the ten days the tube was fitted Ruairí lost nearly 200g, he was vomiting more than ever, which caused them to try an NJ tube which had the same impact. His reflux was worsened by the tube feeding to the point where he had blood in his vomit. The community nurse deemed it unsafe for him to continue to be fed via tube. He was given two days’ gut rest in hospital and then as if the hospital had run out of ideas, they let us home with no more support than we had. 

It was at this point that we tried to dream feed him for each of his feeds, but the problem was he was still being sick especially if we could not burp him when he was asleep. By 6.5 months corrected this was the only way my husband could feed Ruairí at all, he was a little better for me providing the hair dryer was on, but as I was returning to work, this simply wasn’t going to work. I was residing myself to the fact that I would have to take Unpaid Dependency Leave from work immediately after returning, when I found another mum on Instagram who was also experiencing a feeding aversion- I simply love how social media connects you with people like this! I had never spoken to another mum experiencing an aversion. Through this mum I came into contact with Lindsay! 

Lindsay listened to my story with empathy, compassion, emotion and understanding. She had gone through this and was coming out the other side! She asked questions sensitively, acted as the sound board every medical professional up until this point had failed to do and pointed me towards a Facebook group dedicated to parents of babies with feeding aversions. It was on this group I discovered Rowena Bennett’s book ‘Your Baby’s Bottle-Feeding Aversion’. I read the book overnight and then contacted Lindsay again who put me into contact with Rowena, we needed to discover whether Ruairí’s reflux was at a point where her method to tackle the aversion would work. Unfortunately, after lots of questions and thoughts, it was considered by Rowena that it wasn’t going to be successful at that point. Lindsay offered to keep in contact with me and I took her up on it, I knew we would need her very shortly. 

Over the next month, we had a total relapse with his reflux, it was as though he had gone back to the days of his Pyloric Stenosis, his sick was burning holes in my skin! We soon discovered it was a defective batch of Omeprazole and when we changed this his reflux was bought more or less back under control. This coincided with me having a 10-day holiday from work.  

So, at 8 months corrected, I spent 10 days following much of what Rowena recommended, I was the only person feeding Ruairí, there was no pressure placed on him to feed, I only offered him the feed once and if he rejected I would wait 2-3 hours to try again. I also cut out the 10pm dream feed, Rowena told me this was not needed after 6 months old as a hormone kicks in to suppress the appetite overnight by this age and therefore by not feeding him then, the idea was that he would be very hungry in the morning. 

For 3 days the programme felt like it was too difficult! Absolute hell would not be an exaggeration. He took on VERY little fluid, so I had to dream feed to get the minimum milk requirement of 300ml per day into him. But from day 4, things started to change, he cried as he was hungry and started drinking at least half of his milk on every offering. Then to my amazement by day 7 he started opening his mouth when he saw his sister feed. And by day 10 he was actively calling for the bottle! We are now at day 14 and he has had an extra feed today, he opens his mouth wide for the bottle and is not fearful of the bottle at all. He has learned to trust that I will stop when he wants to stop and that his wishes will be recognised. Yes, he still has to be burped every 30ml due to his reflux but all the gagging, coughing, spluttering on sight of the bottle has ended! He has peaked above the 9th centile and seems happier than ever. I couldn’t wait to tell Lindsay who throughout has given me words of advice, ideas and the general encouragement from another mum who understands the pain and fears involved in this battle. 

Ruairí still won’t eat solids, he happily plays with the food and puts it into his mouth, but isn’t swallowing much yet, but that is our next Mountain to climb and I am sure we will get there! I have to respect his boundaries, respect his wishes and know that if we could beat the bottle aversion we can do anything! I can finally begin to enjoy the two gorgeous babies I had so suddenly almost a year ago!

Words by Lauren, London, UK

Lindsay Wark