Silent reflux in babies: Why won’t anyone listen to me?

Silent reflux in babies: Eli happy asleep on daddy

Last week we had a hearth-breaking tale from Emmy’s Mummy about her little boy Harry and his struggle with silent reflux, this week we have another tale from another mum who had to battle to get a diagnosis for her little one. Jess McGlynn is mummy to Meg (3) and Eli (1) and blogs at http://catchasinglethought.blogspot.co.uk.

My eldest Meg suffered with reflux. Normal reflux (if there’s such a thing!); the kind where after every feed/whenever she was lying down/pretty much all the time she would vomit. It got to the point where we had to use pillowcases on her Moses Basket mattress as we just couldn’t keep up with the washing demand!

It took about 3 or 4 weeks to get help from my GP. In that time I heard “it’s colic”, “it’s just one of those things” “all babies cry” so many times I felt as though my head would explode. I was a first time mum, and I felt so isolated by the fact that my baby was always crying!

Eventually we were prescribed Gaviscon and things settled down. When I was pregnant with Eli I felt I was more aware of what reflux would be like. I’d heard that it could run in families so I was prepared to look out for the signs.

When Eli was born he didn’t take to breastfeeding as quickly as Meg had. He seemed to fuss a lot even when we were still in the hospital. The midwife told us that he was very mucusy from his quick arrival and probably suffering from ‘stage fright’ and not to worry about it.

About a week after he was born I noticed that he had developed a rattle in the back of his chest and a cough. As Meg was at nursery and always bringing colds home I didn’t think too much of it. It wasn’t nice for a newborn to experience but at the same time it didn’t bother me too much.

I was however bothered about the length of time he took to feed. He seemed to always be fussing and whereas I had been able to settle Meg with a quick feed it would take Eli a long long time to feed, well over an hour and with a toddler in tow demanding my attention as well it was beginning to concern me. He would scream beforehand, scream during and scream after. I knew it wasn’t my supply; I had a quick let-down and often ended up expressing bottle after bottle full as he never seemed to stay latched for more than a few minutes.

At the end of the first week I spoke to my Health Visitor about my concerns. She said it was natural; he was probably still suffering with mucus from the birth and just to keep going. Still feeling hormonal I nodded and agreed.

The next week, after struggling through I took him to see the doctor. I asked him to explain why Eli still had a cough, why he was struggling to feed and why he cried whenever I came near him. I told him that Meg had suffered with reflux and that he had all the same symptoms, constant crying, arching back etc but he was never actually sick. The doctor looked Eli over, read his notes, told me it was probably mucus or a virus and he’d get over it.

I went home.

The next week, I returned to the doctor and was told “it’s just a virus.”

I stopped going out.

I couldn’t cope with the struggle of trying to watch Meg and keep her entertained whilst dealing with a baby who would scream whenever I tried to feed him. My body was so desperate to feed him that when it came to it I would literally spray milk everywhere which just made the entire experience humiliating.

My Health Visitor started coming round every week ‘just to check on me’. She felt I was suffering with PND and that I should try to get out more. Eli was putting on weight, there was no reason why I should be finding it so difficult. Outside of ‘feeding’ time he was a smiley happy baby and she saw no reason to be concerned.

I kept on returning to the doctors. Every week for 3 months of Eli’s life. Each time I was told “it’s just a virus.”

My Health Visitor told me ‘off the record’ to stop trying to breastfeed and to switch to formula. She informed me that it was her opinion that some women just weren’t meant to breastfeed and I needed to think about the affect it was having on Meg now that it was taking me 2 hours to get one feed into Eli.

The thing that stumped me was that Eli was never actually sick. With Meg she had been sick constantly and it was obvious there was something wrong. But no matter how many times I Googled, or asked for advice from a health professional or spoke to other mum’s around me, no one could explain why Eli had this persistent cough and why he made such a fuss about feeding.

Then came my encounter with Dr Amazing. I told the story in my post here about Eli’s possible heart murmur. It happened to be one of my “I know there’s something wrong with my baby” visits when it was picked up and it’s only through that encounter that we ever got the diagnosis of silent reflux. Once I had the paediatrician in my grasp I was not going to let go without a satisfactory answer!

He watched Eli feed, listened to his chest and then diagnosed silent reflux. He prescribed us Gaviscon and Ranitidine, suggested we bottle fed him with Cow & Gate Comfort formula (I’d long since given up breastfeeding) and sent us on our way. Within days we saw a difference. It was still tough going, he would only take 2 or 3 ounces at a time but he didn’t cry nearly as often when the bottle came near him.

When he was 17 weeks old we hit another rough patch.

Eli refused to feed altogether. We were meant to see the paediatrician in September to discuss the possibility of early weaning and our appointment had never come through. I remember distinctly being in floods of tears to the hospital as I felt like all our progress was slipping through my fingers and I just wanted some help. Eventually (through taking a back route for which I will be ever grateful to a fellow blogger for suggesting!) we were given an appointment. We were told to start weaning and to come back in a couple of months if we still had problems. Luckily for us the weaning did the trick, Eli seemed to suddenly cotton on to what it meant to be sated and never looked back.

Silent reflux in babies: Eli now happy with an apple

It upsets me that there isn’t enough support out there for mums. I don’t know why none of the GP’s I saw suggested anything other than ‘a virus’ for 3 months. It was 3 awful, awful months of my life where I felt as though I was failing as a mother as I never seemed able to settle my baby. If we’d never had the chance encounter with the paediatrician, how many months would I have spent feeling that way?

I felt totally isolated in my situation. Nobody seemed to understand my concerns, I felt as though I was banging my head against a brick wall and no matter how many times I said that it was something more than a virus, I was just brushed aside. It really shouldn’t be that way.

Silent reflux is hard to diagnose because there’s no visible evidence. The acid reflux comes up but then is swallowed back down causing your baby to experience heartburn type pain. In most cases they put on weight and are generally happy other than random periods of the day when they will cry for no apparent reason, and it’s very difficult to settle them.

THIS DOESN’T MEAN YOU SHOULDN’T GET HELP!

I am honestly whitening my knuckles in frustration that because it’s not apparent, because your baby will most likely be gaining weight, it’s not taken seriously. It IS serious when you are the mother who is struggling to feed your child, when you feel alone, and helpless that your baby appears to be in pain, and there isn’t anything you can do to stop it.

I wish there were more resources out there available to help mums who are struggling with reflux. GP’s should be more up to speed on issues like reflux and silent reflux and how to spot the tell-tale signs and should be more ready to pass on referrals without mums feeling like they have to be pushy to get the help they need. I know that after 3 months of suffering with Eli I didn’t feel at all emotionally in the right place to dictate to a GP that they needed to get me a referral to a paediatrician.

I honestly don’t know how long I would have struggled on if we hadn’t been sent to the children’s hospital, but I can hand on heart say that I am so glad that we were.

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