Silent Reflux - One Parent's Story

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We were contacted by a mother who asked us to post her story. So below find this mothers account of having a baby with silent reflux.

Reflux - The Silent Story

Read any baby book and you will read about Reflux, most babies have it to some degree and this is usually described as ‘positing’ or a ‘sicky baby’. However there is another form of reflux that seems to be a big mystery and in many cases is not even recognised. I hope through writing this article I can at least do my little bit to raise awareness of this most distressing condition.

When my daughter was born in September 2003 we didn’t know that we were about to enter the hardest four months of our lives. Now I know that its hard with a new baby but this was worse than we could ever have imagined.

A few days after giving birth we were aware of a few problems with our daughter. Instead of the ‘nice quiet time feeding my daughter’ that all the books promised, we had a baby who gulped her feeds and wriggled and arched her back as if in pain as she drank. After the feed she would scream the house down and nothing would soothe her, instead of putting her down for a nap we would be pacing the floor with a wriggling screaming baby until eventually she could cry no more and would fall asleep on our chests, only to wake an hour later with a jolt and the routine started all over again.

Nothing soothed her, she screamed when we changed her nappy, she screamed if we put her down to play. The final and most difficult problem was that she could not be put down, now I don’t mean sometimes I mean never, not even in her pushchair, the few times we tried to take her out she became so hysterical that she scratched her face until it bled. At night she slept on my husband and I, upright on our chests, it was the only way we got any sleep at all.

As anyone who has had a baby will know the midwives come to see you for up to 10 days after the birth to check that everything is going ok. Well things were far from ok so every time the Midwife visited I explained the problems we were having. The explanations varied from ‘colic’ to ‘all babies cry’ to ‘a naughty baby’, and after the 10 days and after I had told the midwife that ‘it was a living hell’ we were discharged. So it was on to the health visitor, again I told her of the problems and again was told it was ‘colic’. Now as a first time mother its hard to trust your instinct but somehow I knew something wasn’t right. It took me six weeks of pestering to finally get an appointment with a community paediatrician.

The day we saw the community paediatrician was the turning point. She agreed that something was not right and we were referred straight away to the hospital. Here after the worst two months of our lives we finally found out what was wrong with our daughter. She had Oesophageal Reflux or ‘silent reflux’ as it is sometimes called. In short the reason my daughters reflux was not diagnosed was because unless your baby is vomiting then reflux is not recognised. However, how many adults suffer with reflux? Are they constantly vomiting? No of course not, in adults reflux is more commonly known as ‘heart burn’. So basically my poor baby had severe heart burn, with the acid from her tummy burning her inside. As the paediatrician said ‘she will be red raw inside’.

Now my main reason for writing this article is to hopefully raise awareness of this condition, as with a few simple rules these poor babies do not need to suffer like my daughter did. Obviously if you suspect your baby may be suffering it is essential that you seek medical advice. However whilst you're waiting the two months it takes for someone to take you seriously there are a few techniques you can try to help your baby.

The main idea behind these techniques is gravity, keep your baby upright and the acid is less likely to travel back up from the stomach and burn -

1 Put a pillow under your baby’s mattress to raise it at one end.

2 Place a cushion under your babies head when changing the nappy, after a bath, or placing under a play gym.

3 Leave your baby upright for half an hour after a feed.

4 A dummy really helps to keep the acid down in the tummy.

5 Use the travel seat in your pram so baby isn’t lying flat.

These few tips really helped us and combined with medication life became much better.

Oesophageal Reflux is usually something that most babies grow out of by the time they reach their first birthday and I am happy to say that this was the case with our daughter. I have been amazed by the lack of information on this condition as I understand that it is not uncommon, just grossly under diagnosed. Why are the medical professionals so slow to diagnose the condition when my baby’s symptoms were text book ‘silent reflux’. I may never know but hopefully by writing this I have helped someone somewhere.

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Another Mum's story of her own experience with silent reflux on the NHS Choices site:
http://talk.nhs.uk/blogs/birthtofive/archive/2009/08/10/silent-reflux.as...

my daughter has just been diognosed with silent reflux and she is 16 months old , she was born 3 weeks early and has downs syndrome 2 days after birth she began chokeing in her incubator and was rushed away into nicu where she was then put onto oxygen which after 16 months she is still on now , we are now hoping that due to her having the silent reflux is the reason she is on her oxygen and hopefully will beable to start weining her off fingers crossed .

she has never shown any signs of having reflux ,she has never been sick or shown any discomfort when feeding or being fed or chokeing none whatsoever so as you can imagine a great shock to find out she has it in the first place mind you she is one in a million :

also i must add my grandson also has reflux hes nearly 12 months old and still to this day vommets nearly everyday and they cant find the reason for this either

 

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Hi,

So sorry to hear she has been diagnosed with silent reflux and is still on oxygen. What a worry for you all. Do they know what is causing her reflux?

Sorry your grandson is suffering from it too. Is he receiving any treatment for his reflux? Is he in pain with the vomiting or is he just sick?

Hope to hear from you,

Kitty

Dear Mum
 
Thank you for writing about silent reflux. I have got a four year old daughter who has just been diagnosed with silent reflux.
 
When my daughter was born she just seemed to cry all the time. When I fed her, she stayed latched on for a few mins and then would keep coming off and cry. She would then latch back on again and I even visited the BF clinic for help. At night she just screamed and would never lie down in her moses basket, so she always fed off me in the night and then fell asleep on my chest. As she was my first I thought this was normal and that all babies cried.
 
Fast forward four year and numerous visits to the GPs over her severe eczema, bloating, constant ear infections and coughs and colds. It all came to a head this March when my daughter was sent to St Mary’s hospital as she had severe eczema which covered her face. The Consultant there was amazing and listened to her whole medical story and told me that she suffered from silent reflux and has done for 4 years. I was shocked as she never was sick as a baby. So off we went with lanzaprazole to help her.
 
At the moment we seem to be having a few good days and she has slept in her own bed for the first time in about 6 weeks and she is sleeping for a good few hours a night. I am hoping that her milk, soya, egg and wheat free diet is starting to work. My daughter has never slept through the night and most people have said to me that is because she is being naughty and wanting attention.
 
Well we are now trying to make sense of everything. It is quite upsetting to think that my little girl has been in pain since birth and just wished someone would have taken my concerns seriously a few years ago.
 
Thanks for sharing your story
A x

hello,

im 12 years old, & my younger baby brother has been to hell and back since his birth in july. My mum&step dad have tried and tried to seek this problem with him, but  not yet to succeed since a few weeks back. He has been diagnosed with silent reflux after numerous doctor opointments. my brother can never stop laughing, smiling & kicking his legs with excitement, only untill darkness comes, he wont settle, and does not get any sleep during the night, this has made my mum constantly cry which has effected me and my other brother(10 years of age).

i really do hope a cure is found, and my baby brother can live a normal life, thankyou for reading. x

Kitty's picture

Hi, It is really lovely that you've posted about your little brother. You obviously care for him and your mum very much.  I'm sorry to hear he's in so much pain at night, this is just like my 2 boys were and it is very upsetting to hear them in pain. It must be very hard for you and your brother.

I understand why your mum cries, and I cried a lot too, but I want to reassure you that things will get better as your little brother gets bigger and then things will get easier for your mum. Things got a bit easier in our house once my boys got some better medical help. 

I hope the hospital are helping you and your family. 

You are very brave and I'm sure you and your brother are a great comfort to your mum.

Kitty