If your baby is having problems feeding and settling, it could be that he is suffering from reflux. It can, however, be difficult to get a diagnosis.
New mum Emma was convinced there was something wrong with her baby but it took more than a year before the experts recognised that her son James was suffering from reflux.
In the meantime, her home and family life came close to collapse, and baby James was in almost constant pain. Emma knows it shouldn't have been like this, and contacted babyexpert.com to share her experiences in the hope they will help others in the same position.
Here is Emma's story:
'The evening after James was born, I fell in love. He was peaceful and silent – no doubt because of the pethidine I had been given during labour.
That was one of the last blissful moments I or my husband Adrian would experience for many months.
In the morning, James woke with a piercing cry. I picked him up, he lay on my shoulder and after a while James stopped crying. But he wouldn’t lie down and wouldn’t lie on my lap - he would not stop crying.
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 was using my breast like a soother, sucking to comfort himself but he screamed when I tried to remove him.
When James and I went home the following day, he 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. At night his cries were so loud, I paced for hours, jiggling, jostling and patting James to get him to sleep.
He never slept.
Visitors were a welcome distraction for James and for a moment the crying would stop. Friends laughed at our apparent exaggeration that our baby never stopped. They suggested ways to stop the crying.
We’d already tried everything: ‘just leave him to cry’; ‘go to him as soon as he cries’; ‘make noise around him’; ‘be quiet around him’.
I tried to get James to conform to the routines in books but he wouldn’t have it. I was told I’d soon distinguish between his cries, but they all sounded the same to me.
On top of everything, I just couldn’t get to grips with breast feeding. James would latch on and break off, doing this for hours. He made my breasts sore and I was awake all night while he fed. It was a heart-wrenching decision but after many tears I opted for formula so I could see how much he was drinking and to get some well-earned rest.
Meanwhile, I was worried that Adrian had not yet bonded with James. He’d enthusiastically turn up from work to greet us, only for his expression turn to dismay when he saw my exhausted desperation to get away from our bawling son.
On the rare occasions James did sleep, it was for literally five minutes at a time. He would go to sleep propped on a pillow in the front room; I would dash from the front room to the kitchen, wash his bottles, put them in the sterilizer and get the formula ready and by then he would be awake and screaming again.
I felt a failure as a mother. I was tired of the constant advice from family and friends and fed up with James’ never-ending screaming. I was losing weight and didn’t give a damn about my own health.
A friend had suggested maybe James was lactose intolerant. When I put this to the health visitor, she sneered: ‘If he had lactose intolerance you’d know, he wouldn’t eat his food.’
James had gone through six formulas by now, I pointed out. ‘Then you haven’t found the right one yet.’
I went back to my GP, knowing they already considered me a paranoid mum. I explained about his lack of sleeping, on and off eating, the fact that he arched his back and neck when 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.
The doctor told me he’d found it hard with his little ones too, and maybe I needed some more anti-depressants. Then he suggested a urinary tract test ‘just in case’.
It came back positive – James had an infection. At last we thought we’d found out why he was so uncomfortable, but despite antibiotics still the crying persisted.
Internally, I was fighting a personal battle. I knew that James was poorly but no one would listen. I started doubting myself. I worried that I might even harm my baby. I resented friends with happy gurgling newborns, and was sick of hearing myself talk about how hard life was.
James had frequent bouts of urinary tract infections caused by a stubborn bug and eventually he had to be hospitalized so IV antibiotics could be administered. It was distressing to witness.
When James was five months old I’d had enough and paid to see a private nutritionist. He put James on Nutramigen and told us our baby had lactose intolerance. A reaction to the formulas we’d given him was causing the bad nappies and hence the UTI.
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 suggested maybe James had ‘reflux’. It was the first time I’d heard the word.
Impossible, said my health visitor, as James wasn’t being sick constantly. By now I’d lost faith in her opinions and advice.
It was five months since the birth. Adrian and I were avoiding friends, avoiding socializing outside the house with James, bickering and spending the briefest of times shopping for necessities. We felt isolated.
One night Adrian came home from work, stood in the kitchen and broke down. Even my strong fearless husband was falling apart. We needed help.
I was relieved to go back to work and leave James at nursery I dreaded collecting him at 5.30pm. It shouldn’t be like that.
One night I looked up reflux on the internet. 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. At last I felt that I wasn’t alone.
I discovered that there are different types of reflux with varied severities.
The definition of reflux: Splashing or pushing of stomach contents backwards up into the oesophagus and out of the mouth or nose.
But James had silent reflux. Sufferers do not usually vomit, which can make a diagnosis difficult as one of the main symptoms is not present. Sometimes the vomit is swallowed back down or it may not come up high enough to reach the mouth or throat.
Silent reflux can cause more damage because the acid has twice the opportunity to damage the oesophagus and digestive tract.
Symptoms can include (but not always):
- spitting up or vomiting, up to 3 hrs after a feed or eating (this is not always the case)
- symptoms of colic
- constant or sudden crying
- poor sleeping (waking frequently)
- being irritable and/or in pain
- hiccups or wet burps
- arching their backs during or even after a feed
- running noses
- smelly unsoiled nappies.
Poor weight gain is not necessarily an indicator; some children (like James) will eat more because they are uncomfortable and a full stomach seems to make them feel better temporarily.
On top of this, reflux, allergies and lactose intolerance can go hand in hand sometimes. Hallelujah!
Now I just had to convince the professionals.
My GP referred me to an NHS doctor at the hospital. James was six months old. I walked in with my screaming child. As soon as I closed the door, James stopped crying and almost smiled at the doctor. As I told her the long sorry tale, she watched James and told me how healthy he looked.
‘No, he hasn’t got reflux,’ was her verdict. On cue, James began crying and arching his neck. I said, ‘But look, he’s arching his neck.’ She suggested he was trying 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 bloomin’ well wasn’t, but this wasn’t about me it was about my son.
‘Have you ever considered James has episodes?’ she said. ‘When he arches like that he could have a mental disturbance.’ She was going to make an appointment for us – eight weeks later.
I gathered up James in my arms and fled in tears. Not only did I feel like a failure as a mother but now a doctor was telling me my son had a mental problem and I had to wait eight weeks to find out.
I refused to go back and see her and instead made an appointment to see a private doctor. I explained everything 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 feeds with Carabel but slowly, and just as James began to walk at 14 months, he seemed to look more comfortable.
It took a number of weeks but he actually began to smile. For both James and me, that wiped away the pain for the briefest of moments. James 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.
I needed therapy to get over the guilt I felt over the pain my baby had been in for so long.
I had felt such jealousy 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.
I now know it was nothing to do with me, we are good parents and did everything to help our child feel better. We were right to persist and we were there for him.'
Useful links:
http://www.riic.org/silentreflux.html http://www.livingwithreflux.org/signs_symptoms.html http://www.reflux.org.au/survival.php
