Reflux can be a living nightmare, for everyone involved. For baby, it’s understandably and often relentlessly horrendous, and for parents, it’s incredibly upsetting.
The feeling of helplessness coupled with the severe sleep deprivation that goes with a poorly reflux baby is absolutely brutal. It feels like things will never get better. It feels like this angry, upset and constantly pukey baby will never grow out of it. It can push you all to your limits.
With Maddie, all three of us found some days better than others. There were even some nights we felt like we were winning, turning a little corner, with one less snack feed, and one longer cat-nap… then BOOM! Her symptoms would ramp up with a vengeance.
When Billy was born, we noticed his discomfort and reflux symptoms early on. From around six days old we thought ‘Oh no…! Here we go again!’
The spluttering, puking, swallowing, choking, pulling away from the breast, painful burps, wind and face acne were all symptoms we recognised from around his second week of life as a CMPA and soy intolerance. Just like his sister.
Our hearts sank at the prospect of the long and painful months ahead. For a week we thought we’d got away with it. It seemed as though we had a healthy and problem-free baby. But then history started to repeat itself. The only comfort was that this time, we knew exactly what to look out for, and we knew exactly what we had to do.
Reflux and CMPA
Reflux that stems from a Cows’ Milk Protein Allergy and soy allergy are sadly common issues faced by babies. It’s not always, but CMPA is a condition that can go hand in hand with reflux, and it was the case for both Maddie and Billy.
Breastfeeding Billy, I quickly cut out dairy, and soy in fact, after an outbreak of baby acne after one huge bar of Dairy Milk (I was GD during pregnancy and consequently making up for it post-birth!). When cutting out dairy from your diet, it is worth remembering that it takes a couple of weeks to completely leave your system, so the benefits aren’t often visible straight away.
I breastfed solely until around a month, which was a real achievement for me, despite every effort, my supply with both babies was limited. (Pointing you in the direction of my other in-depth blog on this topic to keep you fully informed!) We began to top him up at night with formula.
As you’ll know from my previous blog, on his 19th day in the world, we were admitted to A&E and then the children’s ward for three weeks for his UTI and blood infection (completely separate issues, the poor boy!). However horrific that was, it meant we were in the best place to get his CMPA / soy and reflux issues sorted there and then.
The hospital performed an ultrasound that visibly showed the reflux action and the milk coming back up – although strangely, even though her symptoms were much more severe than Billy’s, Maddie was never offered this.
Billy was first prescribed a completely dairy-free formula called Alfamino, which I don’t think he tolerated very well, (he’d scream with pain after a bottle) and so was quickly switched to the gold standard: Neocate, a complete hypoallergenic milk. Also known as the holy grail of milk.
He was also prescribed a daily dose of the dissolvable tablet form of Omeprazole, a proton pump inhibitor that helped to minimise the painful acid that often accompanies reflux. Unlike Maddie, he tolerated this medication really well.
I think the fact that Billy was not given formula containing dairy was a major win in keeping his gut as healthy as possible.
With Maddie, her CMPA diagnosis was concluded after a long and drawn-out battle of trying to figure out what was wrong. In that time, she was guzzling down dairy milk like it was going out of fashion, and projectile vomiting it everywhere in complete agony.
We had no idea what was wrong at first. As new parents, we expected life to be shit but oh my god, it really was SHIT. The big caps are justified. We had just assumed in comparison to our NCT mates, we were lightweight parents, a bit unprepared for life with a baby. I mean, babies were all sicky, weren’t they? But she was so sick, so angry, and so upset. All. of. the. time.
She was eventually prescribed a milk called Nutramigen, which is often the first step on the ladder to being taken seriously.
Nutramigen is a hydrolysed milk with elements of cows’ milk been broken down so much that the body often doesn’t register it so doesn’t produce a reaction.
She was also prescribed liquid Omeprazole, which we could not get down her for love nor money – she HATED it. It was brutal trying to administer this liquid into her mouth. In despair, we went back to the doctors and were moved swiftly onto Ranitidine, which worked well for her. Thank the LORD.
Reflux robs you of those first precious months with your baby
I think the saddest thing about reflux is that it robs you of those precious first few weeks and months with your baby. Those countless times we were told that the condition would pass. Great, but I didn’t want to spend the first ten or eleven months wishing away her life.
I certainly felt as though Maddie’s little life at the time was completely blighted by the disease. She should have been smiling more; she should have been learning to laugh.
Was she missing milestones?
I began to worry that all the pain she was experiencing was causing her to miss little milestones. Just the little ones; the ones I heard about from my NCT Whatsapp group: The proud mummy moments, their babies reaching out for things, starting to show interest in toys and rattles, daytime naps and sleeping through the night. She was busy being all consumed with pain to care much about anything else.
Reflux makes you socially isolated
Reflux can have an enormous effect on you in many different ways. Many people just DON’T UNDERSTAND the pain and the upset that reflux can cause on so many different levels.
I felt like a failure of a mum with Maddie – completely inadequate in comparison to my other mummy friends.
Going on walks and lunches with other new mums not an option. I didn’t feel I could leave the house unless I was very close to home with back up in the form of Jamie or my parents. Going out and planning anything with a baby that’s in pain a lot of the time is very tricky. It’s true, you can’t plan with any baby, but with reflux, it’s worse. Everything in her life revolved around pain. It made me feel so sad that her first experiences of life were overshadowed by this horrible condition, and I worried about her. A lot.
I met a mother in my local garden centre on Sunday, and we got chatting as her 4-year-old daughter showed an interest in baby Bill. The topic quickly turned to reflux and CMPA, and it came to light that her daughter suffered extremely badly with both with as a baby, and continues to be allergic and consequently, dairy-free.
This poor mum told me how at one point in those early months of her daughter’s life, she headed to the train tracks with her baby, fully intent on throwing them both in front of a train. She was depressed and severely sleep-deprived. Reflux babies struggle to sleep. Lying flat on their backs can cause awful pain.
1 in 4 parents of a child with reflux report PND or anxiety
It’s no surprise then, that research conducted by Australian support website found that more than 1 in 4 parents (29%) had a diagnosis of post-natal depression or anxiety. I find this really alarming.
If you’re reading this and alarm bells are ringing for you and your little one, brace yourself. There are times when things will get tough. Remember, you’re not alone. And it WILL get better. Looking back now it seems like a lifetime ago. While you’re in it, it’s complete shit.
The light at the end of the tunnel is that it’s very reassuring to know that all those babies and their parents, have mostly all come out the other side completely unscathed – with only a few carrying on intolerance into early childhood.
My advice to anyone discovering they’re in the same position is to fight your baby’s corner and arm yourself with the things you need that will help you.
Your reflux checklist
Get a rocker that they can sit upright in from birth. That will help soothe them.
Invest in a Cocoonababy. You can only use them for 3 months these days, but they really help keep baby upright to minimise the acid and milk that comes back up after a feed.
Keep your baby upright for twenty minutes after a feed. If you’re breastfeeding, find a position where baby can feed upright.
Make sure your cot has extendable legs that will raise one end of the cot.
Invest in a hundred musys. The last thing you’ll need it to be worried about the dirty washing when your baby is saturating a musy each feed.
Most of all: be prepared for your GP to offer a string of solutions that probably won’t work. It’s almost like a ladder of treatment you have to climb if you don’t go with the right information and put your case across.
My first trip to the GP was fruitless – I came away with a baby massage move. Fantastic! Lovely. Writing ‘L’ backward on her tummy was so not going to cut it.
Suspect your baby has reflux? Here’s what you need to do.
If you’re starting to suspect your baby is suffering, follow these steps.
1. Read the two interviews I did with leading UK gut, reflux and CMPA expert, consultant paediatric gastroenterologist Professor Shah.
REFLUX: Leading Expert Professor Shah Answers Your Questions
https://www.mybaba.com/reflux-leading-expert-dr-shah-answers-your-questions/
COWS’ MILK PROTEIN ALLERGY: Leading Expert Professor Neil Shah Answers Your Questions
https://www.mybaba.com/cmpa-leading-expert-professor-neil-shah-answers-your-questions/
2. Download and print this checklist:
https://www.reflux.org.au/articles/doctors_clinics/checklist-for-visits-to-the-doctor/
3. WRITE a clear list of everything – from symptoms, to worries, to sleep and their routine.
4. Take the test at Children’s e-Hospital and consider contacting them for a quick diagnosis over Skype.
5. Or arm yourself with everything you need from the above resources and take all of this info back to your GP.
Other useful resources:
https://www.facebook.com/groups/refluxinbabies/ - Silent Reflux, Reflux, CMPA, Allergies & Intolerances in Babies
https://www.facebook.com/groups/1031291057011336/ - Reflux & CMPA Babies! Help and Support! Uk
https://www.facebook.com/groups/uparoundtheclock/ - Up Around The Clock, Ellie’s parenting support group
