Dark days of reflux.

For those that have never experienced silent reflux, terming them the ‘dark days’ will likely be perceived as melodramatic, verging on the ridiculous. I cannot however, think of a better way to describe it. The definition of the word ‘silent’ is simply not synonymous with the condition, quite the contrary in fact! Somewhat ironically associated with limitless crying from both babe in arms and parent(s).

Designed with dual purpose, this blog serves as an outlet for a particularly troubling time in our parenting journey whilst also offering reassurance that there is light at the end of the reflux tunnel, one that is more beautifully appreciated having patiently endured the journey that precedes it. I’d like to offer coping strategies en route but I’m not sure I coped so much as endured!

I am not referring to the general gripes, colic and sickness associated with newborns and young babies…’silent reflux’ is another level! A condition associated with immaturity of the digestive system and stomach valves; stomach acid bubbles up and down the oesophagus during, after and in-between feeds (the ‘silent’ element refers to the lack of vomit, for want of a better word). Associated pain causes the baby to scream and writhe around in what appears to be (and probably is!) agony. They are reliably unable to find relief for hours/days/months on end. This doesn’t just happen at the colic witching hour of 5pm…This is constant!

I lost count of the times that well-meaning parents tried to empathise with me. We all try (or at least we should) to be compassionate to one another but sadly, although well intended, the words “my little one had colic too” felt so belittling, so incomparable. There was me, battling to hold it together mentally, sobbing daily, failing to console my precious bundle of sadness, yet, other mums were ‘apparently’ in the same boat, breezing through it, evidently holding their proverbial together better than I could, mum and baby all smiles. The disparity between their comparison obvious only to me.

A simple hug would have sufficed…A hug would have brought comfort in the darkness, not left me falling deeper into guilty feelings of inadequacy.

Our story in short…

Our first son, Bubba, born with reflux, eased us in gently for what was to come. In hindsight his reflux was relatively easy to deal with, though we didn’t feel this at the time, which held us back from expanding our brood too rapidly. Bearing in mind it was a few years back now – with time, our memories erased that part for the good of future procreation!

When our second darling boy, Bubbins arrived, we were lulled into a false sense of security that we’d handled it before and could do so again. The odds were not in his favour – male, family history, cleft palate – a triple whammy! We were not surprised when, within two weeks of being born, the dark cloud of reflux settled firmly over our home and remained for months on end once more.

A day in the life of reflux…

A typical day would start with the only pleasant feed of the day, followed by counting myself lucky if I had an hour or so of happy baby. This time was always marred with guilt, having used ‘said’ hour doing jobs (having a shower, preschool run, washing, tidying, shopping), or simply too exhausted to care; either way, no quality bonding time. By 10am onwards our day would go downhill and so would our emotions. Feeds meant back arching, spluttering, pulling away from the bottle, evident agony with every sip, yet relentlessly screaming with hunger. The only way to get through them was to stand and bounce or pace across the room, pausing every now and again to relieve the aching muscles in my arms and neck. I dreaded each and every feed. Really dreaded!

As for baby groups…forget them! I avoided groups, people in general, for the first few months completely, making excuses for our absence; ultimately I couldn’t face being social, wearing a false smile, I was being emotionally drained. Not to mention the thought of enduring the feeding stress in public.

Happy hour over. Between feeds, Bubbins could not be put down. He barely slept. I got nothing done, other than carrying a miserable baby around on my hip or in the baby carrier; constantly on the move, be it bouncing or rocking. Simple tasks such as preparing meals for my eldest were nothing short of hazardous (tending to boiling pans with baby attached to my front!) If pain from carrying him all day got too much, I’d transfer him to the pram, propped up to near toppling point, and my foot would be permanently attached, rocking back and forth, I couldn’t even stop to cross the small kitchen, the screaming was relentless!

My poor husband would return home to a completely bedraggled wife, usually in tears, handing him a screaming baby. Followed by an attention deprived three year old pulling at his leg to come play, since Mummy hadn’t been able. I despaired. A perfectionist failing on all levels…In hindsight we should have taken turns with the eldest’s bedtime duties, to have protected mummy time, but in the thick of it I just couldn’t bear to hear my hubby struggling with the youngest. Mother’s instinct I guess.

Daytime tears and feeding battles paled into insignificance when it came to the evenings. As is common with silent reflux, a gradual, yet significant increase in pain occurs as the day proceeds and acid builds up. I simply wrote off happiness post 4pm and couldn’t see an end to this routine. Every day saw me spend around six hours solid, sometimes longer, completely and utterly unable to comfort my son. These were the darkest hours. We both cried oceans of tears, collapsing with exhaustion at 11pm or so, to sleep for an hour or two before the cycle recommenced. I battled sadness away from the door with every evening that passed. This was life for many, many months.

Countless attendances to the PAU (paediatric assessment unit) to seek help, culminated in the consultant able to offer only an arm of comfort and the suggestion that he knew how hard it was to deal with. They had already exhausted the medicinal options available. Our tiny son was effectively rattling (all be it in liquid form), and even this cocktail didn’t appear to touch the pain. I am embarrassed to say, I cried with pity for myself. What a sorry state to get into. People deal with far worse, I know that, and I could see that by simply glancing around the ward. Yet my tears were real, I selfishly couldn’t see the wood for the trees.

We tried everything. Baby massage was no use, mostly done lying down, it made matters worse. Cranial osteopathy initially provided marginal improvements but after four sessions with inconsistent benefit we gave up. We switched from expressed breast milk to ‘heavier’ formula which made a small difference (though I’m sure with better dietary advice we could have used breast milk for longer). The only real benefit came from baby wearing as I mentioned earlier. Bubbins became my permanent accessory. I couldn’t just wear him though, I had to bounce whilst doing so. I used a sling library to try various slings, carriers and wraps, in an attempt to find the right one. I still ended up needing over a year of physiotherapy to address the neck problems that came as a result of baby wearing but it was worth it to provide some comfort to my child.

Self doubt…

I questioned myself daily. Was I just failing at being a mother? Was I not fit to cope with a newborn? Was I uptight and somehow my child was emulating my behaviour? The sheer mental exhaustion of having your patience tested to the limits even makes you question your sanity at times – I recall asking physicians if it was all just me imagining it! Fortunately I had wonderful family and healthcare professionals around me, who could see the reality clearly and had nothing but empathy and support to offer. I realise not everyone is this lucky.

Reflux tests your relationships with your loved ones on many levels. You argue with your other half, yourself, your other child(ren) and perhaps worst of all, with your precious, defenceless, bundle of, so called, ‘joy’. I am certain that I am not alone but I am ashamed, and guilt-ridden, to say there were far too many occasions where I shouted so directly at him to “just ******* go to sleep”. I was helpless to ease his pain, completely at a loss and pushed to exhausted limits. My lowest ebb saw me abandon ship, go downstairs and drink a full glass of wine in one fell swoop (my first in over a year). A few deep breaths later and I was ready to start again; attempting to console the inconsolable. Those were the nights where I would lie awake, tears falling into my pillow at the thought of how frightened he may have felt or that he’d think I didn’t love him. Even three years on this hurts me deeply.

We came to learn that survival took the form of shifts with Daddy. We became accustomed to barely seeing each other, eating separately and not having time for a conversation. I also found, callous as it may sound, using one earphone (for background noise) and catch up tv made the hours of reflux hell less monotonous in the early days. I still bounced, cradled, fed, did anything I could, to try and stem the tears, it just helped to take my mind elsewhere and extend my patience that little bit more.

Upon reflection…

It sounds awful to say, but I honestly feel reflux robbed me. Robbed me of what should have been the happiest of times. Smiles, giggles, playtime, days out, precious bonding time with both my boys, making memories. Instead we had some very dark days filled with anxiety, sadness and stress. As tiny babies, our boys could never have known that it was reflux and it’s afflictions that upset us so deeply and not their tears. To this day and probably forever more, I feel a mixture of joy and sadness when I meet other new mums that have content newborns. I am so happy for them and their baby, yet wish we could have had that, and that my babies could have felt contentment – although thankfully they likely won’t remember!

Strangely, I do not recollect the day that the dark cloud of reflux floated away from our home, yet I am immensely thankful it did! I just remember the gradual epiphany that came as each day and evening became more manageable. Realising that Bubbins would sit and smile, having time to play with my eldest, sitting on the sofa in the evening for the first time in what felt like forever or having a glass of wine, with tea and my husband!…Finally being able to throw away the tiny medical syringes that had played such a pivotal role in Bubbin’s first year felt very symbolic too.

Maybe now that I have written this blog, I can pop reflux in the box it belongs and let bygones be bygones. It made its mark on our lives, on our newborns, and it shaped and strengthened us as a result. I’ve discovered I have the patience of a saint when required (who knew!?) and will use that throughout life and its challenges. Most importantly, I can safely say my boys beautiful smiles are none the worse for it.

So be strong reflux mammas. Be patient. Seek comfort in your loved ones. Your smiles will come, along with relief and happiness – all of which are worth the endurance. Much love 😘