James’ Story

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I watch James sleep snuggled up to me on the sofa, holding onto his cuddly ‘Tilly’ dog and study every inch of his face. I am addicted to him, his little laugh, his cheeky smile, and his unconditional love. The silent relaxed atmosphere of the house is a far cry literally from the dark seemingly unending nights of what I felt was a living nightmare when our son was born.
I didn’t bond with him straight away it was more of a relief to get it over with, it surprised me a little as Adrian (my husband) and I had always envisaged being doting adoring parents but all I felt was panic that this little pink thing would be reliant on me always.

That evening however we just stared at each other, I watched him his little hands clasped, eyes straining to see me and I fell in love I had never felt such a need to protect something and nurture something in all my life and it was overwhelming. He was peaceful, silent no doubt drowsy from the pethadine I had been given during labor but it was one of the last blissful moments either of us would experience for many months. On his drive home Adrian told me he’d cried with happiness.

In the morning James woke with a cry, a piercing cry and to me it seemed louder than all those in the ward with me. I picked him up and he lay on my shoulder and after a while he stopped. The other ladies made their way to the breakfast room, bundles wrapped up and laid in their plastic cots but James would not lie down he wouldn’t lie on my lap he wouldn’t stop crying. To give the ladies some peace I picked him up and sat away from them in the ward and I felt isolated a feeling I was soon to get used to.

His temperature climbed and so they kept us in for another night to monitor him. There was a demonstration on how to bathe the little ones and James was taken from my arms I guess they figured he was already crying what harm could it do. We could hardly hear the advice and I laughed it off but I could see the other mums look at me sympathetically; he was going to be screamer!

That evening after several attempts to have James latch on and stay there he seemed to be getting the idea but only for a moment, he’d use my breast like a soother, sucking, comforting himself, he’d scream when I tried to remove him. The duty nurse smiled and commented he must be a good eater but for me at least it was a welcome relief from the constant noise.

Adrian came to pick us up the next morning we placed him in his car seat and he slept. We’d imagined this moment happy, excited and we were, but it was more outweighed by the unknown and leaving the safety of the ward.

We were congratulated by our neighbours upon arrival and sat down with James. The next few days were hard, constant feeding and changing and burping I guess an experience all new parents share. I felt like my breasts were permanently on show. Yet still James screamed constantly he would not lie down I’d hold him all night on my shoulder until my arms ached just to give Adrian some peace. We were in a terraced house with thin walls and at night in the dark his cries were so loud. I paced the floors for hours from one room to the next jiggling, jostling and patting James to get him to sleep but he never did.

Friends and relatives were excited and we were happy to see them. It was a distraction for James and for a moment the crying would stop and friends would laugh at our seeming exaggeration that our baby constantly screamed. Offering tips on trying this and have you done that? We’d tried it all. We smiled gratefully but on the inside it created doubt, perhaps they thought it was us who were failing James and we felt it too.

We’d tried everything all the advice, ‘just leave him to cry’, ‘go to him as soon as he cries’, ‘make noise around him’ ‘be quiet around him’, so many contradictions I was getting confused. I tried to get James to conform to the routines in the books but he wouldn’t have it and I soon relied on my own instincts. I was told I’d soon distinguish between his cries but they all sounded the same to me.

On top of that I just couldn’t get to grips with breast feeding a point my health visitor made me feel very guilty about. James would latch on and break off and do this for hours but he was gaining weight so no one took notice of my concerns. My breasts were sore where he’d pull off and latch on constantly and I was awake all night while he fed. I tore myself apart literally with the decision to bottle feed after relatives suggested well at least Adrian could help.

It was a heart wrenching decision but after many tears I opted for the formula so I could see how much he was drinking and to get some well earned rest.

Adrian then volunteered to do the late evening feed and I’d sit with James to keep him quiet while Adrian slept. I figured it only fair as I was at home but I began to resent it and the fact that I knew Adrian had not yet bonded with James. He’d enthusiastically turn up from work to greet us sometimes and his expression turned to dismay when he saw his tired wife’s desperation to get away from her son.

A friend told me don’t worry about hovering around him he should get used to the noise but I daren’t he would only sleep for five minutes at a time and I welcomed the break. I would literally get him to sleep propped on a pillow run from the front room to my kitchen wash the bottles get them in the sterilizer and have the formula ready, sometimes I didn’t even get that far before he was awake again and screaming.

My Health Visitor turned up on a particularly bad morning. James fed little (but often) had constant hiccups, his nose ran continuously, his breath was foul and his nappies were awful. It was a battle to keep the bottle in his mouth before he’d bat it away and then scream for it back. When she and her colleague turned up I was ready to jump out the second floor window.

She asked me how I was coping, I looked silently at James who was lying quietly on my shoulder like an angel. She laughed turned to her colleague and said ‘You can always tell those mums who will cope and those who can’t.’

I took it like a ton of bricks, I was too exhausted to protest and looked away.. At her ‘help’ clinic the next week she introduced me to a mum who had ’got it right’ and I should talk to her for advice. I broke down in front of everyone and decided I needed some happy pills before I did something I’d regret.

I was failure as a mother, was tired of the constant advice from family and friends (bless them) and James’ continual screaming. I was losing weight and at that point I didn’t give a damn about my own health. A friend had suggested maybe James was lactose intolerant I suggested this to the health worker to be met again by laughter ‘If he had lactose intolerance you’d know, he wouldn’t eat his food’.

But he’d gone through six formulas’ I pointed out. ’ That’s because you haven’t found the right one yet’.

I returned to the doctors with James aware they already considered me a paranoid mum explained about his lack of sleeping, on and off eating the fact that he arched his back and neck whilst feeding, his hiccups, his squirming, constant runny nose, colds, coughs, eczema and most of all the fact that I knew he was in real pain. No one seemed to listen palming it off as colic but no remedies helped him.

My doctor told me he’d found it hard with his little ones too and that was all, ‘maybe I needed to up my meds’. Out of the blue he suggested a urinary track test ‘just in case’. Must to the amazement of my laughing health worker it came back positive, he had an infection. James was put on antibiotics and at last we thought we’d found out why he was so uncomfortable, but still the crying persisted.

Inside I was fighting a personal battle, my dear mum who listened to me with a sympathetic ear suggested I give James to her for a night a week perhaps but something inside me could not bear to be away from him even though I was worried I might harm him. I knew he was poorly and that out of sight wasn’t the answer.

I began resenting friends with newborns who would lie gurgling in their mothers arms and was sick of hearing myself talk about how hard life was. They told me things could be worse but at that time it didn’t feel like it.

A while later James had a little medical procedure to check for vesico-ureteric reflux called a Micturating Cystourethrogram it involved him being catheterized and fluid being infused into the bladder, to check the filling and for reflux up the ureters.

Of course James screamed and Adrian couldn’t watch but it was all over. He then went for an Ultrasound to check his kidneys but all the tests were negative. After that though James had frequent bouts of UTI’s I even learned what to look out for and bought a home tester kit. After a while they discovered he’d had a stubborn bug (possibly introduced from the equipment used to investigate) and he needed to be on IV antibiotics to get rid of it. We spent two days in hospital. It was distressing to see our baby go through that.

When James was five months old I decided enough was enough and paid to see a private doctor a nutritionist. He put James on Nutramigen and told us James had lactose intolerance a reaction to the formulas we’d given him were causing the bad nappies and hence the UTI.

I asked why the health visitor had told me James would reject his milk instantly if that were the case, but he explained ‘intolerance is just that, something that builds up over time, not an allergy that would be instant’. It explained why James settled for a day or two on a new formula but soon began to reject it.

On Nutramigen James seemed a little more relaxed but not better by any means! At around the same time a temporary doctor at our local clinic after another desperate visit suggested maybe James had ‘reflux’ it was the first I’d heard the word. I told my health visitor who told me it was impossible as James wasn’t being sick constantly. Still at that point I was beginning to doubt her word.

We were avoiding friends, never socialized outside the house with James, were bickering at each other and spent the briefest of times shopping for necessities. We felt isolated. One night on his return from work Adrian stood in the kitchen and broke down. Adrian deals with everything but my strong fearless husband was falling apart, we needed help.

It was hard for friends to see what we were going through as every time they would visit James was quiet, when he stayed away we’d hear how good he was but it was merely a distraction for him…a friend told me ‘hey if he’s good with them you must be doing something right, if he can’t tell his mother how bad things are who can he moan to.’ It cheered me up, the first time I felt like I was doing a good job.

I was relieved to go back to work after five months and leave him with the nursery I dreaded collecting him at 5.30. It shouldn’t be like that.

One night I looked up reflux on the net. I couldn’t find anything in the UK so began searching the US sites. I stumbled across numerous websites and discussion forms dedicated to reflux in infants and began to read. It was like finding gold I read so many stories from others going through similar experiences and the hard time they had had convincing doctors about their child’s health. I felt like at last like I wasn’t alone.

I discovered that there are different types of reflux with varying severity. On top of this, reflux, allergies and lactose intolerance can go hand in hand sometimes. Hallelujah!

I was convinced James had this he had almost every symptom listed on every site and more besides, it felt like a weight had been lifted. I joined a Forum where a lady called Karen was giving advice to new mothers. She’d gone through the same thing and every so often would reiterate the symptoms for diagnosis and tips on how to help a refluxing child. She was my hero and I owe her my sanity and possibly my marriage!

I bought a wedge shaped pillow for James’ cot and let him sleep in the car seat after feeding to keep him upright. It didn’t cure itself but at least I knew what it was, now it was just convincing the doctors.

I told my GP who referred me to an NHS doctor at the hospital. James was six months old. I walked in with my screaming child but was enthused. As soon as I closed the door James stopped crying and almost smiled at her. I poured my heart out and told her the long sorry tale. All the time she looked at James and told me how healthy he looked but James’s eyes were red from crying and always had a dark line under them where he never slept.

She didn’t even so much as look down his throat and said ‘no he hasn’t got reflux’. On cue James began crying and arching his neck. I said ‘but look he’s arching his neck’ she said no he’s trying to strain to look at something’. I couldn’t believe it. I was adamant it was reflux and she was treating me like a child. ‘Are you coping?’ she asked. No I wasn’t. ‘Are you on medication?’, this wasn’t about me it was about my son. ‘Maybe he’s just miserable’ she volunteered, miserable? How did that make me feel as a new mum? ‘Have you ever considered James has episodes?’ she said. Episodes what kind of episodes? ‘When he arches like that he could have a mental disturbance.’ She was going to make an appointment for eight weeks for me.

I picked James up in my arms and fled the surgery in tears. Not only did I feel like a failure as a mother but now our son was miserable and she’d almost convinced me James had a mental problem and I was to wait eight weeks to find out.

I refused to go back and see her and made an appointment to see another private doctor. I explained all of it and told him I knew James had reflux. He started us on Zantac and Carabel and made an appointment for a PH Probe to be done.

It took some time before the dosage was right and James refused any feed with Carobel but slowly and just as James began to walk at 14 months he seemed to look more comfortable. It took a number of weeks (I guess for things to heal) but he actually began to smile for both James and I that wiped the pain away for the briefest of moments.

He still wasn’t sleeping through the night but he was more settled. Finally we received an appointment for a PH probe. A small tube was inserted through his nose and down towards his belly, readings were taken over 24 hours to measure the level of acid. It was distressing to see them fit the tube but he was a little star, he ran round the hospital all day with me chasing after with the machine he was hooked up to. We’d stopped the zantac a few days before and noticed the difference in him, his sleeping habits and irritability.

I wasn’t convinced what they would find as for so long we had been told different things by different people I didn’t know what to believe. A doctor told us the next morning that James had had two significant reflux episodes when he was laid down. Adrian and I sat in silence but I was so relieved to hear it.

We were ready to leave when my private doctor walked in. I told him how relieved I was to learn of the results. He said he didn’t consider them to be hugely significant. My heart sank again as once more we’d received conflicting advice from the medical staff. I don’t know whether after hearing my story he was protecting the surgery after leaving us for 18 months but that’s what it felt like.

I now know that the PH probe has a very high specificity so any positive result should result in the diagnosis of GER (reflux) and yet we were sent away without any advice or follow up for James. I pushed past him and was content with the first diagnosis and now just had to concentrate on getting on with our lives.

I had therapy to get over the guilt I felt over his pain, I’d felt such jealously over content newborns and resentment from missing out on that first year bonding with our child not to mention the numerous occasions I received bad advice from the health service. After a conversation with my mother recently about my own ‘fussiness’ as a baby we concluded that I too had reflux but 30 or so years ago it wasn’t recognized or named. It runs in the family.

James is nearly 5 now as he gets older it’s easier to know when he is uncomfortable and of course he can tell us he’s in pain. He gets a tummy ache just above his belly button and his reflux still keeps him awake at night, his forehead is often cold and clammy.

With a new baby on the way my husband and I decided James had been left to his own devices long enough. Our new GP listening intently and following a visit to another private doctor James was put under the care of the John Radcliffe hospital. He had an endoscopy and two Barium swallows one with a meal (the difference being James was led down to swallow the liquid the second time).

The first showed nothing but thank fully the test was repeated and I could see for myself the liquid reflux back up James’ throat. This they told me was significant again the relief was enormous but I felt much sadness too to think he was still suffering.

Based on the results of this and his history James has been officially diagnosed as having reflux and unlikely to grow out of it at his age. We are now faced with surgery or the decision to change his medication. The procedure (fundoplication) would involve tying the esophagus to the top of James’ stomach to act like the sphincter that currently is not tight enough to stop reflux. However the side effects are a little daunting to say the least. We are hoping a new medication will help him long enough for James to be able to make his own decision, that time will only tell.

James copes with all his symptoms admirably, he still avoids dairy foods, still hiccups more than most but he is the most lovable beautiful, funny, happy little light that is our world. As I watch my husband let him jump on him for the fourth time and hear the giggles, I know he is just as much in love with James as I am and that feels so good after so long.

Slowly Adrian and I are learning to let go of this perfect image of the little boy we’d envisaged, he never existed but instead we have our James and he is more than we could ever have wished for. There was little known about reflux in the UK or at least in my experience, doctors seemed reluctant to diagnose it. I’m hoping as time goes by more will recognize reflux exists even when it’s silent and that they take the time to listen to the cries of the families struggling to cope.

To all those who pace the floor night after night babe in arms, life does get better you are doing a great job, keep going back until your satisfied, insist on second opinions, take any help offered by friends and family and remember although in the middle of the night it sure feels like it, you are not alone.

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About Author

Jonathan

As well as being one of the founding members of refluxSUPPORT...Jonathan is a Board Member and trustee of Living with Reflux – the only UK Charity for infants with reflux related conditions.He is also a stakeholder in the National Institute for Health and Care Excellence (NICE) – Gastro-oesophageal reflux in children and young people.He has three daughters of which the eldest is now seventeen. Two suffered from severe reflux.