“What’s wrong with him? Why won’t he stop crying? What am I doing wrong?”
I asked my husband desperately as our suffering six-week-old screamed and squirmed in my arms for the eighth consecutive hour that day. He had been unsettled for more or less the previous fortnight as he transitioned from sleepy newborn to a more alert, awake baby. I hadn’t given the milk spit up much thought despite my daughter never having done it two years ago, because babies do spit up, right? However, I was completely unaware that his milk rejection was actually the early manifestation of a condition I had never heard of but would soon learn all about... Reflux (silent reflux would have prevented him from regurgitation). Events of that evening quickly escalated to our first visit to A&E with a baby struggling to breathe through his own cries and discomfort, which concluded with a diagnosis of asthma and a prescription inhaler (although no tests for asthma were carried out as he was far too little). I wasn’t convinced but I was grateful to have what I was told would be an end to his crying.
It was not. If anything, the following month was even worse for us all; dealing with near constant crying (from us both), projectile milk vomit, sleep deprivation and a baby who just could not seem to find a comfortable position whilst simultaneously parenting a strong willed toddler daughter, had us all in an exhausted, anxious, unhappy mess.
Still blissfully unaware of the term “reflux” I headed to a cranial osteopath to see if that might help him. Nope. A few weeks and a few hundred pounds later he was still a crying, agitated sleep thief who seemingly enjoyed spraying every item of clothing with regurgitated milk froth. By now he was around four months old and I felt around eighty years old: One expects a degree of sleep deprivation when parenting a baby, but this felt next level tired. My body ached, my mind was a blur and my confidence in my capability as a mother had plummeted. It was like sensory overload- everything was too much. Noise was too loud. Touch was too intimate. Movement was too fast. My head was a washing machine on a fast spin cycle. So had it not been for my mother-in-law realising something was off, I might not have visited the GP and had my diagnosis of postnatal depression and anxiety.
Having a poorly baby is hard. It is even harder when you are poorly yourself and lack the ability to make any sort of rational decisions because your lights are on but nobody is at home. During this time, I had to switch to survival mode. I knew my son was unwell and nobody was really listening to me therefore I knew I had to fight to get answers, yet I wasn’t sure I had the strength to ask the right questions, do the research and comfort this tiny human who needed me so badly. The following months passed by in a haze. I was in the depths of depression but as we mothers tend to do I somehow found the strength to care for my children. His clearly wrong asthma diagnosis was thrown out after a few weeks and we were directed by a number of health visitors and GPs (nine in total, never a constant familiar face as none of them were the same ones visit after visit) to try the baby on various relief from Gaviscon to ranitidine to propping the cot up and early weaning- all without effect. Eventually his vomiting stopped but his eyes constantly streamed clear mucus, as did his nose and in the end his ears. Every
night he would cough, usually a wet cough with a gurgling sound in his back, to the point that broken sleep became the norm for all of us. In the end a new GP admitted it sounded like reflux and referred us to Manchester Children’s Hospital under the Ear, nose and Throat clinic.
My son was eleven months old at his first appointment there, he had suffered for ten whole months despite my pleas to so many medical professionals. Upon examination it was found that his nasal passage was so blocked they couldn’t get the camera through for endoscopy. Cue a prescription of Omeperozole and a further appointment for the following month. I remember crying with relief on the journey home because I felt like we had finally been heard, like our pleas to help our son were being answered. My hopes for decent sleep, a clear mind and a happy baby seemed to be not all that far away.
Within a week the phlegm began to clear up. His eyes and ears stopped seeping phlegm and the cough, albeit still present, became less. At that second appointment the endoscopy was successful. We were informed that the acid reflux had caused enough damage to his little throat and sinuses to have been causing his discomfort all that time. He was prescribed Omeprozole for the foreseeable future, the dosage to be increased as his body grew in size and weight at regular check-up appointments. This lasted until his second birthday at which time his symptoms had cleared up so he was weaned off medication and signed off from the hospital patient list. You would think that was the end of our reflux journey wouldn’t you? All is well that ends well? Nope. The thing about reflux is it likes to stick around, particularly in children. It likes to lure you into a false sense of “it’s over now” whilst the size of the oesophagus and related anatomy is in line with the growth of the child, then spit you back out with force when you least expect it by arriving unannounced and disrupting meal times, bed times and all other routine with its vicious, painful symptoms.
We thought we had it nailed during the Covid19 pandemic. Medication was binned, symptoms disappeared and sleep returned to our house, then BOOM. Summer 2021 brought the return of the dreaded cough. That tiny reflux baby has recently turned three years old and despite being an otherwise healthy, happy pre-schooler, here we are still enduring reflux hell and once again struggling through broken sleep and constant worry. I never thought we would still be here in the same position, it’s absolutely gutting. Thankfully this time were armed with knowledge and experience that we didn’t posess the first time around- we recognised his symptoms and didn’t stand for being fobbed off by the GP, insisting on a direct referral to GMCH, back to the same clinic. Unfortunately the ongoing aftershock of Covid19 within the NHS means that we are currently on a waiting list for our little man to be seen but at least we have a glimmer of hope for a future without watching him in pain and finally getting a full night of sleep. So, what effect has reflux had on me as a person and a mother, given that I’m not the actual sufferer? It has been torture at times. Being unable to soothe my screaming baby is something that will never leave me. Three years on his cry is still my worst trigger, guaranteed to set off an anxiety attack and send my head into a spin. Mental health professionals have told me that it’s likely that I have undiagnosed PTSD, a condition I try (and often fail) to control by shoving all of my unpleasant memories into a ‘black box’ in the back of my brain. I can’t deal with the thought of reliving trauma from that time, yet my inability to address it has led to me being unable to remember important aspects of the first year of his life; I can’t remember what he smelled like, the weight of him in my arms as I cradled him, his first smile or any sound he made except crying, and that kills me. My only way to remember the precious first few months of the last baby I will bear is to look at photos or videos or ask my husband to tell me.
It would be fair to say that where reflux has affected my son physically, so it has destroyed me mentally. Yet I fight on. I am determined to remember all of it now, I don’t want to miss another day of his life, however trivial it may seem in comparison to other life-altering diagnosis that people are unfortunate enough to be dealt. Yes, I am still exhausted, yes I am still anxious and worried about the lasting effects reflux might have on both of us, no he is not recovered and may never fully be, but my God has he shown me strength through it all and taught me how to be a fighter through his own battle.
Parents of reflux children- I see you.
HELEN INGHAM
Helen is a 36 year old mother to Harriet, 5, and Ted, 3 and lives in Manchester with her family. Working as a freelance writer she produces lesson plans and resources for primary teachers as well as becoming an author with her debut book, ‘Cold Coffee: Spilling the tea on what to really expect when you become a parent’ published in February 2021. She has also appeared as a co-author having written contributing chapters in ‘Love thy Body: Real Stories Vol.2’ and ‘Just A Mum- Legacy of Love’. An advocate for maternal mental health awareness, Helen enjoys peace and quiet, reiki and gin.