One of our admin members, Claire Wigley, shares her reflux journey.
Tell us a bit about you and your family
I’m a first time mum to twin boys born at 32 weeks. They’re 20 months corrected now, and getting cheekier by the day. My partner Ed is in the Navy. I’m originally from the UK but have called Sydney home for the last 10 years. Prior to becoming a twin mum and having no time, dry shampoo filled hair, I loved being social, big foodie. Loved trying new restaurants, drinking wine, just being out and about in this amazing city. I’m a Registered Nurse, I work in radiology. I’m currently still on maternity leave. Hopefully going back just one day a week soon. My son Henry, is still not quite ready for daycare. Not far off though, fingers crossed
How did reflux begin for your family?
Our reflux journey began at the NICU when he was about 6 weeks old. The first obvious sign I noticed, was how unsettled he was at the same time every night, just as we would be getting ready to leave the hospital. That was horrendous in itself, but knowing he was screaming for hours was pure torture. With the help of Dr Google, I found so much information on reflux and Henry was hitting every symptom. When I thought back over the weeks prior, there were other small things, clues that it was coming. But I was unaware until things had gotten so bad he was screaming the NICU down every night. Nothing new for the staff there of course. We were dealing with so much at the time, two babies who were so fragile and small. Both with other complications too. It was such a rollercoaster, you run on pure adrenaline. Even writing this I feel super emotional, but also so proud that we got through those tough days.
What did reflux look like for you? Was it simply the symptom or did you have other complicating factors?
Henry didn’t appear to have any structural issues or allergies causing his reflux. But that’s still something I’m working on now, 18 months later. That’s the biggest thing with reflux, you’re always questioning yourself, second-guessing and it’s mentally exhausting. My baby brain is real too!! He definitely has issues with the volume of food/milk etc. he receives and vomits still to this day, far less but generally still daily at least.
Did you manage to get reflux under control? And if so, at what age?
We managed to get it under control, after medication changes, dose increases etc. around 6 months of age. The vomiting continued, but the pain and discomfort were so much better. I remember myself and my partner holding Henry upright in shifts in our bed and crying too, feeling helpless, that we couldn’t stop his pain. But it does get better when you find what works for them.
What other issues did you face?
Henry had some other issues going on too. He was fed via a Nasogastric tube when he was born until he could breast / bottle feed. Unfortunately, we could never get Henry to take enough milk orally, he would refuse. We know now it was reflux related, but at the time, we continued to try, to push him, so that we could leave the hospital. Inadvertently we had caused a huge oral aversion, on top of reflux-related refusal. I eventually persuaded the Doctors the let us take him home with his tube. As a nurse, the tube itself wasn’t daunting, but his vomiting and food refusal were. It got significantly worse when we got home. He refused to take anything orally after we’d been home for about three weeks. I felt helpless and unsupported. We had a paediatrician that was so nice, but a nightmare to get hold off. They upped his meds, which was great, it helped for a short period, but we needed more advice. I’d always suspected he’d end up requiring a gastrostomy button, he had such poor weight gain, no matter what we tried. Small feeds more often, different formulas, various tests, scans etc. His tests were all relatively normal considering everything that was happening. Throughout it all, I also had his twin brother to look after too. I was lucky I had two, strong, courageous, happy little boys, they made it easier when the days got bad.
What helped the most?
Physically, the medications made the biggest difference for us in the early days. They made things more manageable, he was more settled and pain-free, which gave us all time to breathe.
RISA made a huge difference. To have people who had lived or were living through it, able to answer all your questions, no matter how crazy they seemed, was life-saving. I remember posting in the middle of the night when I’d be up feeding, holding Henry for hours and somebody was always around to answer. No words can describe how that felt, how all the amazing advice felt, how it kept me sane when everything was so crazy around us.
The biggest difference recently has been giving Henry real blended food via his tube. Not formula, normal food that a baby would eat day to day. He actually eats the healthiest diet of pretty much any baby I know. He doesn’t get to throw it on the floor or spit it out like his brother, it all goes via his Gastrostomy tube. Developmentally he has come on leaps and bounds. It’s an involved process, but it’s given him and myself the biggest rewards.
How did it impact your family?
It’s certainly impacted our family. In the early days, I felt so much guilt that
I wasn’t able to focus as much attention on Arthur as Henry. I still feel like that some days now, but things are a million times better. The stress and mental exhaustion have been gruelling. There were days when my partner could have done everything right, but I’d still lose it, such a short fuse, no brain capacity to deal with anything else. I think it isolated us from others, people who couldn’t understand or were not comfortable with it all. Leaving the house was an uphill battle, but I did, pretty much every day, just to the local coffee shop most mornings, but it helped keep me going, made me feel like a normal human being. I also think it will make us stronger. Henry is the most resilient, determined little man, he doesn’t let anything hold him back and I really hope that spirit continues through his adult life too.
Thank you, Claire, for sharing your personal story, we know how difficult it is. What amazing achievements your family have to look back on and we wish you every success and happiness for the future.