Willow’s Story

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March 2007, Basingstoke, England

“It can’t be morning; we’ve only just gone to bed!”

Does this sound familiar? Maybe if you are a parent with a new baby. In our case, we were parents for the third time, but this time our 6 week old daughter Willow, was diagnosed with Gastroesophageal Reflux/GOR for short, most parents call it ‘baby reflux’.

In a nutshell, think exorcist style vomiting! Willow projectile vomited back her feeds on a regular basis, suffered with a sore throat (due to acid) a little dry cough and nasal congestion. She wriggled and arched her back at every feed and constantly leaked both ends. She was irritable most days.

A whole new world of uncertainty and anguish opened up for us. GOR meant that Willow couldn’t lie flat as the milk/stomach fluids effortlessly rose back up into her throat and out of her mouth with force – sometimes up to 2 hours after she’d fed. It looked like cottage cheese and didn’t smell much better! Willow never slept as the regurgitation woke her moments after she had dropped off. Every morning she  would be covered in a blanket of cold sick, all over her and the cot.We gave up trying to find a routine and use a cot and for the first few months she slept vertically, in her car seat for short bursts. I don;t really know how we coped with two other older girls and a business to run, but we did.

We were referred to the paediatric team at our local hospital and within a week, Willow was prescribed ranitidine.  it did something over the next few weeks, but nothing significant. We were feeding small 2/3oz bottles by this point, every few hours, just to trickle feed her on demand. I had  given up breast-feeding as I couldn’t keep up with demand (because her suckling was so intermittent, I don’t think I ever produced decent hind milk anyway.)

Prescriptions

Over the next few months Willow’s prescriptions increased and she was on Ranitidine, Omeprazole/Losec MUPS/Domperidone. Infant gaviscon just gave Willow constipation and we tried all the formula’s on the market to no avail. We were prescribed a formula called Enfamil AR which was pre-thickened but flows in a normal teat and it stayed down!

Having no previous experience of baby reflux the first place we looked for information was the internet. Amazingly there was a massive worldwide community talking about baby reflux in parts of the world. Many people offering advice and suggesting different methods of coping.

Positioning

We quickly realised that Willow’s upright position was the key to not only keeping her feeds down (well some of it at least!), but also maintaining her happiness and stability.

Not prepared to sit back and wait for a year to pass on medication (as that’s how long we could wait for her little body to outgrow reflux and sort itself out) we decided to look at as many products and ideas to improve Willow’s situation.

Everything from sleeping, to changing nappies had to be done on an incline, so that’s what we did.

However, finding products to help with this in the UK was difficult. Some products are listed on medical websites, lost in amongst medical supplies and others are listed as one of many products on a general baby products store – mixed up with baby clothes, toys and sundries. We didn’t really know what we were looking for or what the product was called until we tripped over it. In many cases, products are available in the US or Australia, but not UK on our doorstep.

Wedges

Sourcing products for Willow was essential and over a very short period of time, we shopped all over the world and accumulated some  specialist baby products that would help with keeping a baby elevated safely.

We became experts in reflux issues and disease and the number of hospital visits we racked up was into the double figures. We tried all different types of products and positioning devices.

We started joining in on UK web forums and message boards – It really helped to talk, but we wanted a UK forum. There wasn’t one so we set up our own www.littlerefluxers.co.uk which slowly grew into https://reflux.support

I soon realised we had a real ‘collection’ of products, sourced from all over the world. Forum chats with other parents and carers turned into sourcing products for people, where we’d bought before and so www.babyreflux.co.uk was born! The website is a portal for UK parents to discover more about baby reflux/GORD and an online store providing specialist products for babies with reflux, just like Willow.

We continued to cope with acid reflux as our daughter grew older. By the time she reached 18 months she was no longer being sick regularly. She doesn’t like the taste of milk or dairy foods and only eats yoghurts that are flavoured. She has a heightened gag reflex, which we think is an unconscious learned behaviour from all the months of gagging.

To give you a flavour of how we improved Willow’s situation –

  • We used 2 Wedges in the cot and under the changing mat. Both lift to a different angle.
  • We also had a spare wedge for traveling with.
  • Willow used an upright bath support.
  • We used a sling everyday as Willow cries a lot with the acid leaving a sour taste and needs plenty of comfort – also if she gets too upset, she makes her self sick. Slings are also great for special trips like going to Hospital, when she has her check ups and weigh-ins. We tried a few and found those which support the baby’s spine and not slump baby’s chin on chest, are the best for reflux.
  • We used large bibs and Muslins for just about every feed – they are a life saver at approx 30cms long, especially just before going out!
  • We used air reducing vented bottles to reduce air intake whilst feeding and a good quality dummy to promote saliva production.
  • We used oral syringes for giving the meds we are prescribed, instead of spoons. The Syringes supplied with the meds don’t last very long and we re-use them so much the calibration rubs off when washed at high temps. We buy them by the box.

There is no right or wrong product for refluxing babies, it’s all trial and error, but we have tried every product we supply on our site and the most important thing is to have options and not be afraid to try ideas. Don;t forget to talk it through with someone close.

If our websites can provide parents with ideas and options for their little ones, then we feel our journey has been all the more worthwhile.

Rachel Phillips

(If you want to share your story with us and members of the babyreflux community, please get in touch or view https://reflux.support)

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About Author

Rachel

Mum of three and co-founder of reflux sites - refluxSUPPORT, babyREFLUX and littleREFLUXERS.Gathered loads of experience and wisdom talking to thousands of mums and dads who have little refluxers. Campaigning to reduce the number of infants given prescribed drugs for reflux.Superb at parallel parking and eating biscuits.