2017 was the start of new challenges for our daughter which left me without a moment to breathe. It put a stop to my writing which I was hoping to publish a long time before now. Despite the time lapse I’ve decided to share it since it is where our endless roller coaster began.
As a fiercely determined individual I had never once questioned my ability to deal with whatever life threw at me – until I met reflux and it broke me.
Of course I always knew motherhood would be challenging, but nothing could have prepared me for what turned into the darkest and loneliest journey of my life. I know this may sound melodramatic to some. And perhaps this is why I’m writing – to expose the rawness of living with a condition that has the power to turn your life upside down.
My beautiful daughter turned three recently. Wow! The joy I felt watching her open her presents was such a stark contrast to the darker emotions which had dominated the early part of our life together. I could not help but marvel at the overwhelming love which caused me to lavish her – almost over zealously – with kisses.
I know why this depth of feeling was absent for so long and I want to share with you some of my journey. Why? Partly for my own therapy. But, more importantly, so those of you who have walked a similar path can seek comfort in the knowledge that you are not alone. I also hope those around you will gain some insight into the often under-estimated impact of this horrible condition.
Some won’t appreciate my honesty but it’s here for those who might.
It hasn’t been easy to write, not just because it is incredibly painful to recall our experience but also because I want to ensure I honour our girl. She became our daughter. And then came Silent Reflux. The two are separate. The one being our beautiful bundle of blessing. The other being an horrendous story of pain. What was difficult to bear wasn’t our daughter. It was her pain.
A lot of babies have reflux – this is normal. What I am writing about is not ‘normal’ reflux. It’s about uncontrolled, agonising silent reflux which is vastly different and far from common.
Early Days
After an incredibly prolonged and traumatic labour, we were discharged from hospital four days later. I knew there was something different about our little girl soon after we brought her home. She became a feeding machine permanently attached to my breast day and night. I was told ‘this is normal’…‘she’s just bringing your milk in’…but my experience of five years working with newborns told me otherwise. Yes ‘cluster feeding’ is normal but the nocturnal clock babies are born with usually involves some sleep during the day. Our daughter, on the other hand, hardly ever seemed to fall into a deep sleep and her feed-a-thons were around the clock. By day 9 she had gained over a pound in weight. Something simply did not feel right.
When she did sleep it was only ever in my arms or when the pram was kept moving. At 10 days old I remember pushing her in the pram up the street in the pouring rain in an exhausted stupor, clinging to the knowledge that this (albeit extreme) newborn phase was just for a time and I could hang on until it started to get a bit easier. I convinced myself I could do this.
Thank goodness it was just for a time I thought.
By week two it became visibly obvious that our little girl was getting uncomfortable acid reflux, which involved stomach acid shooting up her oesophagus into her mouth and back down again. It often woke her after just minutes of sleep even when in my arms and it was not unusual for her to sleep just 3 hours in 24. Recovery from my four day labour was an impossibility as my husband had returned to working very long days and weekends after only a couple of days at home with us and I could not find a moment, day or night, to grab sleep.
Then the night time shrieking started…
And it didn’t stop.
There was a constant anxiety in the pit of my stomach and I was filled with dread at each feed, waiting for the inevitable when our daughter would start to feed voraciously – the only thing that could initially calm her – and then throw herself off the breast in pain, shrieking and stretching her body out and up, stiff as a board. The pain seemed to give her strength beyond her age. It felt like I was offering her poison and I sobbed at each feed.
Hospital
Eventually the hours of relentless and frantic car driving through the night failed to soothe her at all and the all-night screaming began. Our daughter would shriek the night away in the baby carrier and if ever a moment arose when peace descended it would quickly disappear the moment I sat down with her to rest my aching body.
She would eventually exhaust herself by the early hours of the morning when I could carefully rest my body upright on cushions, carrier and baby still attached, for one or two hours until the cruel cycle of frantic feeding and crying began once again.
We found ourselves battling to get pain relief and various other medications into her, desperate to try anything that might ease her suffering. But nothing did.
At six weeks old her consultant paediatrician advised admission to hospital for investigations. This was a last resort for us so I started a dairy free diet four days before Christmas in the hope that this would ease her distress. Christmas Day arrived and she was still suffering. The endless shrieking continued and each time her poor little exhausted body seemed to ‘give up’ she had seizure type episodes with rapid movements during which her neck was strained and rotated and head contorted to the side. We later learned this was her way of coping with the pain.
Christmas Day was spent in hospital. The on-call consultant reassured us that despite her reflux this was extreme ‘colic’ and it would magically disappear by 3-4 months old. I remember thinking that’s another month or more – how will we cope?? We will die of exhaustion before then. The consultant tried to offer reassuring words – ‘She’s just a baby, she won’t remember it’.
But she was my baby. And I would remember it.
I fought back tears as unhelpful comments ensued from those who simply could not begin to understand – comments about children playing up to their parents, as if she was some sort of eight week old manipulative genius who enjoyed torturing herself and those around her.
This only fuelled my feelings of frustration and isolation. But it was only the beginning of what was to be a very dark and lonely journey – a living nightmare at best.
Read more about living with acid reflux in my following posts:
It’s not just Reflux – it’s our Lives
For help and support: Babies With Reflux and Silent Reflux – a Facebook group which has been a lifeline to me and Living With Reflux – the UK’s national charity website.
Mamma Me and my girl 