The second in the series of stories by parents who have achieved success against the odds. Having children inspired and motivated them to accomplish great things!
Rachel Phillips’ experience as the sleep-deprived mother of a child with severe Gastroesophageal Reflux Disease (GORD), inspired her to set up an advice website and online specialist retail store. While the website has become a lifeline for many worried parents, the retail side of the venture has developed into a flourishing business, turning Rachel’s negative experience into a positive.
Rachel’s story…
“We had always wanted three children as both my husband and I come from large families. We were delighted when our first daughter Jessica was born in 1998. She was a very sicky baby and back then there were no discussions about ‘infant reflux’ with health professionals.
We were just told we had a ‘sicky’ baby and struggled on for a year. Our second daughter Chloe arrived in 1999 and with no excessive sickness; we felt Jessica’s vomiting was a one off. Little did we know that the birth of our third daughter Willow in March 2007 would challenge that, in more ways than one!
At first Willow would bring up part of her milk as a projectile vomit, perhaps once a day, with intermittent sickness between feeds. By her six week check with the GP, Willow was sleep-deprived, had a permanent cough, was projectile vomiting every feed and her weight gain was just at ‘the acceptable level’. She was crying out, grumbling and distressed all the time and never slept, just napped for moments at a time. We couldn’t lie Willow flat to change her without her screaming or being sick. She was fussy around her feed, staying on the bottle for only a few minutes before screaming out in pain and arching her back. All of our attentions seemed to focus on the detail of each feed and trying to find ways of keeping the milk inside Willow long enough to be digested, in most cases resorting to feeding tiny doses ever 2/3 hours.
Surviving on a few hours of sleep each night…
We were surviving on a few hours of sleep each night, tag teaming the baby sessions. Night time was always worse than day, Willow’s crying seemed louder (in a sleeping house). We’d routinely creep about our own home like strangers, looking for sound-proofed parts of the house, so as not to wake up our other children. We couldn’t even resort to the night time drive, as the vibration of the car caused Willow to become unstable. It was impossible.
Unhappy mum, unhappy baby…
Visiting our GP was such a relief. Her immediate response to my pale and weeping demeanour was ‘Unhappy mum, unhappy baby’. It was suggested Willow was suffering with Gastroesophageal Reflux Disease (GORD) or ‘Infant acid reflux’ for short. Reflux is the word used to describe what happens when the stomach contents come back up into the gullet or into the mouth. In some babies, the stomach contents rise but never reach the mouth so the baby doesn’t show any visible sickness, but still suffers with the pain of Reflux.
“I didn’t move a muscle….so she would sleep, without pain”.
We were quickly prescribed medication starting with milk thickeners, and then moved on to antacids and acid suppressers/blockers and motility medicines. We realised that despite the cocktail of drugs Willow was taking, we still needed to ‘manage’ her reflux day to day.
We found that the connection between a successful small feed and a nap was crucial to keep the milk down, so we found ways to feed Willow and let her sleep wherever that may be, rather than trying to force a routine of finding a cot or sleeping place. There were times when Willow would drift off to sleep on my already dead arm and I didn’t move a muscle, shallow breathing and talking in whispers – so she would sleep, without pain. The washing built up, the house was a mess, the dinner sometimes forgotten, but we slowly saw our daughter a little bit happier, feeding better and in those moments of ‘live pause’, I actually shut my eyes too.
Until she finally overcame her reflux issues at fifteen months old, Willow’s positioning and handling was the key to not only keeping her feeds down (well some of it at least), but also maintaining her happiness and stability. We felt reassured and more relaxed about what we were dealing with. We looked at buying specialist reflux products but it was hard to source anything in the UK at all. In fact, we found that many UK parents and carers were seeking advice from the USA or International websites as the UK doesn’t seem to cater for reflux specifically.
From sickness to success…
In no time at all, we had accumulated some specialist baby reflux products. Over a period of months of talking to other parents and trying out products, I had acquired a wealth of knowledge about the condition and so I decided to make use of this by launching a website to help UK parents. www.babyreflux.co.uk is designed to help UK parents discover more about baby reflux/GORD. Together with online support and advice pages, we have an online store providing specialist products for babies with reflux, just like Willow.”
Are you thinking of setting up your own business?
RACHEL’S TOP TIPS
1) Tiredness can zap you of all you positivity and drive, so ensure you have people around you to help you get things off the ground.
2) I would advocate all the usual preparations like analysing the marketplace, understanding the undercurrent in the chosen business sector and striking out at the right time, but make sure you have a support network around you (friends/family) to help you overcome things like the lack of self confidence that can occur when you are tired.
3) When I started babyREFLUX, I was tired, very tired. So I started small, controlled and within my time and financial limits. If you bite off too much when you are tired, it may seem like a huge task to drive forward.
Seven years later and babysleep.org is still going strong! For further information visit babyreflux.co.uk or babysleep.org.uk or online support forum Little Refluxers.
Has parenthood inspired you to achieve something great? Overcome an illness, set up a business, fulfil personal or career ambitions? If so, I would love to hear from you. Please get in touch on [email protected] or contact me on Facebook or leave a comment below.
We are a bunch of volunteers and starting a new
scheme in our community. Your website provided us with useful info to work on. You’ve performed a formidable process and
our entire neighborhood will likely be grateful to you.
I asked my doctor if my son might have reflux and she said yes, all babies have reflux, it’s just more of a problem for some of them and your son is obviously feeding and growing so don’t worry about it. Looking back now I’ve had a second child, perhaps I should have worried more about it. Hard to say.
(Later I told this doctor I thought my son might be allergic to egg because he slept so much worse at night if we gave him egg and she said well stop feeding him egg. Why are we having this conversation? Are you seriously paying me money to tell you these things?) (He’s ok with egg now but I did do several exclusion/rechallenges and it was very consistent. The doctor probably had a point on that one.)
I think there ate degrees of it. I think my first may have had it but she was not as distressed as willow. Just a lot of vomiting. Everywhere. After every feed.
Ha yes. I think he may have done!!
We didn’t have the vomiting so much but we did have to rest him elevated/carry him upright after every feed (actually, I think that was on advice from the doctor, so) and he was just very fussy. Possibly though I should have pushed harder for something more. It was still a very tough time.
Yes but we basically trust everything the doctors/health visitors etc say when we have our first. I wish I had pushed more about the severe vomiting but was told it was normal in some babies!
Well obviously your doctor agrees with mine… and ordinarily I’m all for let’s not muck with “normal” but on the other hand I’m not totally opposed to trying to shift the bell curve a little in some cases, either…
Yes. I am finding I am more willing to shift it with my second baby if my instincts tell me too. I told my poor instincts to piss off a lot with my first!
What a great, informative piece. My son had reflux, it was bad, but not as bad as for Willow. It made life with a new baby even more complicated and exhausting though, and I felt so guilty every time he writhed in pain, woke up with it or vomited and found it quite difficult to get help. I remember the GP saying, ‘It’s OK, he will grow out of it, you don’t actually have to do anything.’ Luckily, despite my knackered and hormonal state, I told him that really wasn’t acceptable and went elsewhere. It was OK according to him, for a baby to be screaming in pain, hardly sleeping and vomiting ten plus times a day. Dickhead!
It can be quite hard to diagnose though, especially the non-sicky ‘silent’ type, I actually just thought Sam was a bit awkward, hating his pram and wanting to be held all the time. He fed so much due to the sickness so was gaining weight quickly which apparently is actually a symptom, but can also mean you get fobbed off when looking for support. We all felt better once we knew and could make some adjustments though and the idiot GP was right in that it did go eventually, but ignoring it definitely was not the way forward!
Oh the poor thing. I definitely think the silent type is something that needs highlighting. The poor babies and parents that must suffer for months. This is one reason i never left mine to cry…you just do not know if there is something going on that you can’t see!
This is incredible! Our first baby had bad reflux (it wasn’t as bad as Willow’s, but it was bad). We had to use one of those wedge pillows under his mattress to elevate his head, and some positioning pillows to keep him on his side in case he spit up (which he always did) to avoid choking (which he also did). After every feed, we would hold him up for 20 minutes at least before putting him down again. People said we were spoiling him by doing that, but we knew we didn’t have a choice. He also always napped better in an upright position, so we would sometimes hold him during the entire nap or put him in a carrier and walk around for an hour. When we put him down, we would grunt for hours, which drove me crazy because (1) I had no idea if he was in pain, (2) I had no clue what to do and (3) because it was NON STOP and stopped me from getting some sleep when he actually did sleep. All our clothes were stained all the time, and we always heard a SPLAT when we put him on our shoulder for a burp (sound of spit up hitting the floor). We weren’t even surprised by it anymore.
Boy this took me way back!
I am half thinking my eldest might have had reflux as she would vomit all the time and would cry out in pain when I put her down on her back. But the doctors all seemed to suggest it was just what some babies do.. nothing was said about reflux! Willow had it terribly – it must have been so distressing for everyone in the family. x
I watched a friend fight to get attention to her baby, clueless myself. They were great, sleep deprived to the extreme and still walked their baby in a carrier for hours to help her sleep upright. At the end they got some relief with medication and the girl growing up to be a happy toddler. But I hope more talk about reflux will make life a little easier for others!
Yes it can be so distressing for the parents and a lot of the time it can go undiagnosed. My first baby was sick after every feed for the first six months of her life and I now wonder whether there was more to it than just being a ‘Sicky’ baby.
My daughter was pretty good as long as I breastfed her, that is for the first 6 months. Then the nights got worse, and she’d refuse to eat most things but was otherwise happy, so compared to many others, e.g. the parents of children with reflux problems, we got off easy. But her nights and eating were bad until she was about 2,5, and we realised she was allergic to potato. 3 doctors had told me it’s not possible but when we made sure she didn’t get any potato (nor lactose, which we had realised was problematic earlier), she started sleeping, and even wanting to try new food for the first time in her life. So it could be anything that causes the problem!
Now that is one I have never head of. We never looked into the allergy thing.. As, bar putting them down on their backs up to about 6 months old, when my babies wake up they are generally not in pain just being a pain! Thankfully the eldest sleeps ok now, I just have my little one to deal with. But reading about Willow makes me feel I have it easy really.. constant waking is one thing, but with the sickness would be just terrible..
I agree, it does give you perspective, when you read about Willow. Poor little thing (and her family too). And we survived, nights are pretty good here already, so hopefully the calm will last at least until they are in their teens 😉
Oh god the teens! I already lay awake at night worrying about the teen years!!