A mother's heart-wrenching story of colic and reflux

Author Nikki Johnston

16 March 2017
A mother's heart-wrenching story of colic and reflux


My son, William, was born naturally with no complications.  He was our first born and to us a miracle, as we had not expected to be able to have children.  He was beautiful - long and lean with wrinkled, baggy skin hanging off his bones.  He frowned from the moment he was born and would stare at everyone and everything with big brown eyes and seemed like a wise old man reborn.  He was content and happy.  He didn't cry for the first week, he lay peacefully and slept beside me in the hospital whilst other babies cried.  We had to wake him to feed him.  The nurses were concerned as he wouldn't eat for the first two days.  I was confused and scared because they brought in paediatricians and said I might have to go back into hospital if he didn't start to feed.  I didn't know what was wrong with my baby - was it because I couldn't breastfeed and he was refusing the bottle?  The nurses were very nice, helpful and comforting, but they couldn't ignore this passive, non-eating, non-crying baby.  I thought he was just perfect. 

I knew that I couldn't breastfeed from the moment he was born.  I had taken my top off for skin contact, and my midwife had asked “did you have any breast changes during pregnancy?”  I said “no, was I supposed to?”  It turned out later that my Mum and Grandmother had both been unable to fully breastfeed their children and had experienced the same disappointment.  I was devastated - I think I cried for the loss of the expectation of breastfeeding more than I have ever cried before.  Every time I fed my baby, I would cry.  After every feed as I tried to express milk, I would cry.  Every time someone else fed my baby, I would cry.  I couldn't stop it, I felt fundamentally that I had failed my baby and already, he had not had the best for him in life.  Looking back, I wonder if I experienced some form of Post-Traumatic Stress Disorder.  It was a real shock to me - and the crying still emerges if I think about it.  It is something that struck at the core of me, and I can't explain why - after all, it's not that bigger deal, but I still carry a weight of it. 

I had to sign a waiver to feed him formula.  I had to walk past posters of 'breast is best' to heat my bottle.  I had to leave my baby to go into the kitchen to make the formula.  I had to watch and listen as other women learnt to breastfeed.  I watched them watch their babies feed and I cried.  So did their babies.  Night after night, I would wake to other peoples’ babies.  I would look at mine, peacefully asleep, and wonder if there was something wrong with him.  Looking back, I wonder why I didn't just relish this rare blessing, but I didn't.  I stressed and I cried.  I wanted to go home.  I felt inadequate, unable to stand the kindness of the nurses as they came in routinely and chatted to me whilst they hand expressed 1-2mls of colostrum.  I would be brave - this is for my baby, it is liquid gold and I need to do this for him.  They would tuck me in, make sure I was fine, I would say yes, they would leave, I would cry. 

Nothing felt right and joyful, except when I picked William up and looked into his serious, wide eyes and knew that we would work through it all together, and if we did that, we would be fine.  On the fourth day in hospital, Will started feeding - and he was STARVING!  The nurses kept saying he had had enough for now, and don't give him any more, so I would sneak to the kitchen and get him some more - he was still screaming.  I thought I knew best for my baby, and honestly, I couldn't stand that he was now crying incessantly.  I felt observed and wanted to go home.  I was probably over-feeding him, but I wanted him to be happy again. 

I want to say at this point that the nurses at the hospital were amazing.  They nurtured me, listened to me, rubbed my back as I cried, and genuinely felt for me, I believe.  They did all they could to make me feel better and to ensure I was confident in looking after my baby.  Their approach was gentle and caring.  I never felt they were being abrupt or unkind, but my emotions were in high gear and I was sensitive to interpretation.  I still remember their names and faces.  I still remember sitting alongside one nurse on my bed at 3am and just sobbing.  I looked at her and she was crying too.  She said “I have no answer [to why you can't breastfeed], but I've seen you with William and I know you are a wonderful Mum”.  It meant the world to me then that someone believed in me, and it still does.  They still have my son's photo on their pin-board, and if I ever pop in, they remember me.  My struggle was unusual to them, my emotion raw, and they remember me.  I'm humbled. 

My husband picked me up and we had to go to the supermarket on the way home - hundreds of dollars on bottles, sterilisers, teats, formula.  What was the right one, how many bottles did I need, what is flow?  No-one had been able to tell us how to bottle feed.  We were on our own and we felt it.  We read instructions for hours.  We had to get this right; we didn't want to make our baby sick.  At the hospital, the nurses had made up formula in the morning and put it in a jug in the fridge for the day.  I didn't have a clue how to mix it up, and the can said to make only what you needed for the feed and throw the unused amount away.  The amount of formula, and money, we wasted would blow your mind.  We were fortunate to be able to afford it, one less stress. 

On the sixth day, our idyllic wee boy became a distressed, unsettled, monster.  He was very 'outside' the norm.  He would wake routinely at 7.02am and stay awake all day - until 8-10pm at night.  He was not often unsettled during the morning, and would not be that interested in feeding, but after a feed would need to be upright for 1-2 hours crying and writhing around before vomiting enormous amounts.  He could hit a wall three metres away.  Every feed required enormous amounts of comfort - bouncy, rocking, movement.  If the movement ceased, he would scream again.  Whilst rocking, bouncing, moving, he would cry incessantly.  Nothing ever worked to stop him crying for 1-2 hours after every feed.  His bed head was very raised to the point where we worried if he pitched forward he might fall out.  So we belted him in for a while, but that didn't feel right either, so we hoped for the best and prayed for the best. 

He didn't sleep through the night until he was 2 years old.  On that morning, we raced through to his room in the morning fearing the worst, to be greeted with a smiling, happy baby.  Overnight he became happy and content again.  I can only grant it a miracle.  Our ordeal was over and we could finally begin to really enjoy being parents.  Prior to that, I would spend six hours every night walking with him.  I couldn't sway on the spot, I couldn't stand still, and I had to walk.  I hated five o'clock.  My husband was never home before 6pm, and at that time was very stressed at work - probably sleep deprived.  He would help for an hour, but then would very apologetically say at 8.30, 9pm, "I have to go to bed otherwise I won't be able to work tomorrow".  How I hated him every night.  His job ruined my sanity.  Every night I would collapse into bed at 11pm when Will had finally succumbed to sleep - I believed he was too exhausted to resist any more.  Every night I would lie in bed with one ear open trying to sleep but so worried that Will would vomit and drown in it, that I couldn't.  At his first retch, my feet would be on the floor and he would be in my arms vomiting all over me.  I'd change him, change me, clean up the stinky, sticky mess, and feed him… only to start all over again, rocking, coaxing to sleep.  I remember holding him, watching his eyes, willing them to roll back in his head, desperate to see him close his eyelids and keep them closed.  Tears of frustration would roll on to him and many times I'd squeeze him too tight in desperation or want to throw him against the wall.  I never succumbed, but boy did I want to get him to shut up and sleep.  I yelled at him a few times - right up in his face “Just SHUT UP!” Usually followed by “please” and remorse and tears.  I had no break, not able to sleep during the day because he was awake, needing physical stamina to walk and pat for six hours, having so much washing, so much anguish, so much heartache, I just wanted to sleep.  I would snatch whatever time I could.  I began to realise that bottle feeding had some major advantages as others could look after Will while I slept.  But I don't think I ever really slept.  I never truly trusted anyone else, including my husband, (did that cause friction!), too be able to care for William like I could.  When I was “getting some sleep” and he cried, I would lie in bed with my fists clenched and stomach churning whilst someone else cared for him.  What use was that?  William was well cared for, but he was my baby, and I felt wholly responsible for him. 

After each time he fed and finally settled, I’d sit and try to express for 20 minutes.  Then I'd put on the washing or fold it or wash and sterilise bottles/teats.  We had a special teat that a neo-natal nurse gave us that mimicked the action of breast feeding.  I was so determined to get to breast that I would sterilise the teat after every feed ready for the next one.  It only took three minutes but it felt like hours. I would lay my forehead against the microwave and watch the container go round and round.  I would burn my fingers every time getting the container out of the microwave or carrying boiling water with the bottle in it.  I had blisters on my fingers, mastitis from over stimulation, bleeding nipples and a urinary tract infection.  I was angry.  I wanted my son to sleep.  I wanted my son to smile.  I wanted my husband to care enough to help.  I wanted to make a badge that said 'stuff off, I can't breastfeed and it's not your business'.  I thought this was what new mothers felt like.  

I tried to get out of the house every day.  It was good for me.  I would try and walk to get fresh air in my lungs.  I would have a shower every day.  I would wash my hair and put on lipstick.  I would meet friends for coffee and chat and laugh.  I would make tea for my husband every night and blend vegetables to freeze for 'first foods'.  I was doing great, considering.  But at home by myself, I'd sit on the floor and cry uncontrollably.  Day after day after day.  It got harder to get out of bed.  When I heard William cry in the night, my stomach would clench and my heart would skip a beat.  I hated that sound.  It was never a short, easy solution.  That sound meant another two-three hour marathon.  

If he had smiled or played with me, it might have been easier.  But William never stopped frowning.  He had permanent lines across his forehead and he would not play.  Tummy time was a no go.  He did not roll - ever.  I stopped going to my parenting group because of all the questions and comparisons.  I stopped going to ante-natal because the babies the same age were so different to mine.  I stopped going out because the 'coochy coo' of kind strangers was returned with a ferocious stare.  I would watch their smile fade and confusion set in before they offered a polite smile and would politely disengage.  I used to joke “don't worry, it's not personal, he doesn't smile at anyone”.  But it wasn't funny to me.  My boy was in pain.  He was serious and somber.  I didn't know what to do.  My dream of motherhood was not like this.  I couldn't play peek-a-boo or hide and seek with my boy and get a response.  I played the games anyway.  I learned (or wanted to believe) that if he was watching, he was learning and if he was learning, it would all emerge one day.

My parents were amazing - always there, always willing to help.  And my Mum understood the heartache of not breastfeeding.  She let me rant about that for a really long time.  I needed to rant.  I felt really broken by that.  Having a difficult child to cope with compounded everything and finally at six months, everything broke.  Little white pills saved me.  I still take them today and truly believe that if I had not gone for help, I would have spiraled too far down for safety.  I was exhausted in a way humans shouldn't be.  My baby was exhausted and needed what I couldn't give.  I hated seeing his pain and not being able to help.  Mum told me later she hated seeing my pain and not being able to help.  

I tried osteopaths, body talk, alternate medicines, medications, acupressure, and prayer.  Anything that anyone ever suggested, I leapt on.  I spent hundreds of dollars.  I wanted to end this suffering for my baby.  I wanted to get some sleep.  The ripple effects were far reaching.  I didn't realise until much later how worried people had been, how distant I had become, how sad people felt that I wasn't happy and fun and loving being a Mum.  They told me later how hard it was to watch me play with William and have him stare back, unresponsive.  I loved him anyway.  I loved his fingers, and his toes, his skinny legs and loose skin.  I loved his hair, his beautiful brown eyes and his baby smell.  But most of all I loved his incredibly rare smiles.  They would burst unexpectedly, maybe three times in his first year.  Amazingly, I caught some on camera.  My heart still swells as I recall his first smile.  He was eight months old.  He was in the bouncer on the kitchen bench and I was peeling potatoes in the sink.  His Dad had just left to play golf with his friends.  I was feeling very empty and I looked at Will, chatting to him as I always did, and he rolled his hands around - a sign that he was excited (we thought so anyway), and smiled at me.  I remember crying, cooing at him, cuddling him up.  I felt my heart swell and was shaking.  It was momentous for me and carried me through some tough times to come.  I lived for that smile.  I live for it today. 

My troubled baby, the one who sat on his own and lined up cars and never once responded to peek-a-boo has grown into a delightful, charming, intelligent, empathetic, caring and kind young man.  He has a younger brother (despite my fear and two miscarriages) who also had silent reflux.  But we learned from William. 

I look at my boys now and I am full.  They are everything I ever wanted or dreamed of when I dreamed of being a mother.  They bring me great joy and I would say blithely that I would do it all again, for I survived and he survived.  My marriage survived, just, and I believe my husband would be a different husband/father now that he has had some experience of it.  I was alone in every way with my journey through colic and reflux.  In some ways, it was the only way I could cope.  If I was in control, I could manage.  I had no room for others or their stories.  I certainly had no room for criticism or change.  I needed to be the one to care for my son.  I needed him to need me on some levels.  I had fought hard to have him in my life, I was damned if I was going to give up on him now.  It nearly broke me, and I would have to say to anyone who knows someone with a colicky or reflux baby - keep an eye on them and be prepared to step up and help in a way they can identify you can.  Even if they are not doing things the way you think best, they are doing the best they can.  Don't judge, just support, because they are on a precipice.  They live it, night and day, minute by minute.  You can't imagine it unless you've been there.  Thinking of it today, I have been crying, sweating, shaking.  It was a trauma, for me and for my son.  

It was all worth it, but I don't wish it for anyone, child or parent. 

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