From Feeding Tube to Four Full Feeds a Day!
Baby T’s story
I recently had an SOS from a mum whose baby was refusing to feed and this was her message to me;
“We have a 10 week old baby with severe reflux and food refusal (he’s been in hospital on a feeding tube previously). We are currently trying our second medication (Omeprazole didn’t work) and revisiting hypoallergenic formulas. We are looking for ways to help with his pain management and food intake.
Is this something you could help with?”
To which the answer was of course — “YES”…
Baby T was born at 9lbs 1oz by elective c-section. Even at the birth he somewhat mystified the doctor who delivered him as T didn’t yell or cry at all. He kept his eyes closed and was just very still & quiet. He fed ok to start with and latched on but quickly problems started to emerge. He would latch on make weird gurgling and gulping noises and then stop feeding. He would throw his head back and bend himself backward into a complete banana shape.
He then started to have episodes of going limp — especially when mum was trying to feed him, and he wouldn’t wake up.
On day 6 he had another of these episodes and Mum was so worried that she took him to A & E. He was admitted, though no one knew what was wrong and so to rule things out they did a lumber puncture and gave him IV antibiotics.
After four days he was sent home with no diagnosis and apparently ‘he was fine’!
After battling on for another couple of weeks, feeding becoming increasingly difficult with bouts of screaming and little sleep, so they took baby T to a private Pediatrician who diagnosed reflux and possible CMPI. He was prescribed Omeprazole and a hypoallergenic formula.
However, not being shown or understanding how to give the medicine correctly and being told to add nesquick to the formula and just feed little and often…not surprisingly things didn’t improve!
So at 5 weeks old the same Paediatric gastroenterologist admitted baby T to carry out an endoscopy, biopsy and PH study under GA.
This poor little baby underwent all this only for the Doctor to then say the PH study proved inconclusive (as they nearly always do) and therefore he didn’t have reflux.
However, after the anaesthetic things were even worse and baby T completely refused any milk so he was put on a nasal gastric feeding tube.
A speech and language therapist and dietician came to assess baby T and mum was told that every time he cries or turns away from the bottle she was to stop trying to feed him as he would develop a phobia to feeding — a somewhat crazy piece of advice as baby T evidently already had a feeding phobia and was completely stressed out by the entire chain of events!
After two days in hospital the parents saw a different gastro paed who removed the tube and suggested we ‘start again’ with ordinary formula and see what happens…
The parents by this time had completely lost faith in the doctors and hospital so discharged their baby themselves and went home.
They limped through the next few weeks with just drip-feeding baby T whatever he would take every two hours around the clock. Typically he would suck a couple of times, take 20 ml and then stop. If they ever got more than 60ml down it felt like a total victory. None of them slept and baby T would remain awake for hours either crying or just sitting quietly, not engaging, smiling or looking at toys. It really was a hugely stressful time for them all.
Realising they couldn’t continue like this they got in touch and after hearing their story, I changed other appointments in my diary so I could get to them ASAP. Each day was critical and they were so fearful he would end up on a feeding tube again, but this time it would likely be for the foreseeable future!
Alison’s home visit
Upon meeting this 10 week old and listening to all that had occurred I knew straight away that this was a severe case of reflux and associated CMPI. I came to this conclusion very quickly and not least as they have a four year old who ended up on a hypoallergenic formula as a baby, but there’s also a strong genetic link to gastric issues in the family. It’s also because of the IV antibiotics that baby T was given at 6 days old.
The evidence of antibiotics creating CMPI in an immature gut is well researched & documented within the medical world, but oddly often seems to be ignored!
Right from the day I arrived I switched the formula to Neocate LCP. Added instant Carobel to thicken and switched from the Dr Brown to MAM bottles with a size 2 teat. He was already on Lansoprazole but under Dr Eltumi’s guidance this was increased from 3.5 to 7.5 once every day and I also demonstrated how to give it effectively.
I then had the task of earning baby T’s trust and teaching him that drinking milk could be a positive, happy event and that it was not going to hurt him anymore. Along with this I needed to teach him to sleep again and how to find his ‘off’ button!
It’s difficult to describe what I did and how, but exerting incredible patience and using my deep understanding and intuition of how to manage a baby with these aversions — that first day baby T started to drink some milk. Not only that — he slept too and within 24 hours I had him on 4 day time feeds and by night 3 he wasn’t feeding in the night but sleeping a full 12 hours!
It truly has been an incredible turn around in just 6 days — so much so that Dad said to me this morning “are you sure you haven’t switched baby T for a different baby?”
It’s not all been plain sailing and once I got baby T feeding well with me, we then had to teach him that it was ok to take a feed from his mummy and daddy.
You can imagine the anxiety that can develop when your baby doesn’t want to feed and when his mum saw him feeding so well with me, initially she was really scared about taking over and doing it herself again. Again though, with patience, staying calm and me talking her through it all baby T now happily takes his feeds from her and is still learning that it’s ok for Daddy to feed him too!
The truth behind Baby T’s symptoms
I write these case studies and put them out for others to read as I simply want to spread the word — not about me, but about how we need to change our attitudes to babies and stop saying that ‘it’s all fine’ or ‘its all normal’ or ‘it’s just what babies do’…instead of learning to understand what their signs and signals really mean.
For example, there’s a simple explanation of why baby T was ‘going limp’ in those first few days.
Quite simply it was his response to being in pain from acid reflux.
I’ve often witnessed babies doing this and the first time I saw it was about 17 years ago with a little baby called Phoebe. Every time the mum put her to the breast she seemed to latch, suck and swallow ok but would only do so for a few minutes and the go into a really deep sleep — or so we thought! She appeared so deeply ‘asleep’ that you could change her nappy, put a cold flannel on her forehead, tickle her feet but nothing would rouse her. The midwife suggested that she was obviously taking what she wanted and didn’t need more milk so to leave her be. I wasn’t convinced though and as the days passed there were less and less wet nappies and her latching time got even shorter. So after 4 days of watching this I insisted we got her weighed. Boom — there we had a 7 day old baby that lost 14% of her birth weight and boy — did we then have problem. Watching her other behaviours I strongly suspected she was ‘shutting down’ (it’s the only way I can describe it) in response to pain from acid reflux, but the doctors thought otherwise.
Phoebe was admitted to hospital and tube fed formula along with whatever milk mum could express, but as soon as it went down it would come straight back up.
After 5 days in hospital mum insisted that they take out the tube and took her baby home. Mum asked me to come back and help her manage the situation as she then believed I was right and that it was all a reflux issue. With using an anti acid medicine and thickened EBM and or formula after 10 days Phoebe was feeding 3 hourly, taking decent amounts and more importantly not going into the ‘reflux shut down’ any longer.
It’s quite phenomenal to see what babies can and will do in response to their discomfort and pain. They are so much more aware, in tune with their own bodies and most signals they give off and the quirky little behaviours they develop all mean ‘something’ and they do them in direct response to how they are feeling.
The Magic Sleep Fairy solution
So the day I left baby T this is how things were…
- Medicine first thing on wake up in the morning
- Easily drinking 160/200mls of Neocate thickened with carobel 4 times a day
- Pooping once a day in the morning
- Sleeping 12 hours throughout the night with no dummy or night feeds
- Sleeping 2.5 hours morning and midday with a 30 minute nap around 4:30pm
- Was smiling, giggling, not frowning, engaging, reaching for toys and is truly The Happiest Baby in the Block!
I hope this gives others some insight into what their baby might be trying to tell them and helps parents realise that not everything their baby does is just ‘normal’!
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