PARENTS

Parents Fear Babies With Reflux Will Be Refused Treatment Under New Government Guidelines

09/09/2014 16:23 | Updated 20 May 2015

Hayley Edawards has launcheda campaign to change the way babies with reflux are treated

Thousands of parents are calling for the Government to review the treatment available for babies with reflux.

Many parents have grown concerned that babies with reflux may be denied treatment, after the National Institute for Health and Care Excellence (NICE) issued draft guidance advising doctors to prescribe medicines more sparingly.

A petition calling for NICE to rethink this guidance and asking for the Government to put measures in place to ensure parents of babies with reflux receive the right help, has already received more than 5,000 signatures.

The petition was launched by mum-of-one Hayley Edwards, who knows just how important access to the right treatment is for babies suffering from reflux.

Hayley's 17-week-old son Nathan suffered with symptoms that caused him to choke and writhe in agony after every feed.

It took two months of visiting different doctors before Nathan's condition was correctly diagnosed and he was given medication to ease his symptoms.

Hayley's very concerned that the new NICE guidelines will make it even harder for parents to get treatment for babies with reflux.

"I can't bear the thought of anyone having to go through what I did," the 31-year-old from Wakefield told Parentdish.

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The choking and crying after every feed is terrifying and the lack of sleep is exhausting. If I didn't have a good support network and I'd had to go through that alone, while my GP kept telling me it was just colic or a virus, I don't know how I'd have coped.

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Four in ten babies will posset (spit up) a small amount of milk after a feed, without experiencing any discomfort.

But some babies will suffer from more severe reflux - whereby the contents of the stomach (food and acid) rises back up into the oesophagus or mouth, making feeding painful and causing them to bring up large amounts of milk after most feeds.

Reflux in babies is caused by the valve at the top of the stomach being too immature to hold the food down. Both bottle and breastfed babies can experience reflux.

"After a feed Nathan would grunt, squirm, wriggle and moan in his Moses basket," says Hayley. "He was choking up to six times a day. It got so bad that he was often turning blue. It was awful, but the doctors didn't want to know."

Hayley says her health visitor and GP dismissed her worries and put Nathan's symptoms down to colic. They also told her that her anxiety was likely to be making his symptoms worse.

"When I explained Nathan's symptoms to one doctor, she just put her hand up and said: 'You're looking way too far into things. You're very anxious and I think because you're anxious that's making him upset.'

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I tried to explain that I wasn't anxious, I was just frustrated that I couldn't get any help for my son, because no one was listening to me, but she didn't want to hear it.

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"That evening Nathan choked so badly that he turned blue again, so I called 999 and they sent an ambulance. This time I took evidence and when we saw a pediatrician at the hospital I showed him voice recordings, video recordings and photographs.

"There's nothing worse than having to video your own son in agony, just so you've got evidence of what he's going through."

The pediatrician diagnosed Nathan with reflux and prescribed a medication called ranitidine. After just 72 hours on the medication Hayley says Nathan was 'like a different baby'.

"He stopped choking straight away and he became so happy," she says. "I just wish he hadn't had to wait so long to receive the treatment he needed. If he'd been diagnosed when I first took him to the doctors when he was three weeks old, it would have saved him from a lot of pain."

Another mum, Catherine Brundrett, 30, from Gloucester, had a similar experience of being dismissed by her doctors.

"My son Jack used to arch his back and thrash about when I tried to feed him," she says. "He wouldn't lie down on his back because of the pressure on his stomach, so he barely slept - and neither did I.

"When I took him to the doctor, rather than looking into what was causing my baby to be in pain, they told me I was suffering from postnatal depression.

"But as soon as we got the correct diagnosis and Jack was given reflux medication everything changed. He's such a happy little boy, and now he's not in pain anymore I'm no longer stressed and upset - that doesn't sound like postnatal depression to me."

The new NICE guidelines state that most babies will grow out of reflux on their own and powerful drugs should only be used under the guidance of a pediatrician.

Professor Mark Baker, clinical practice director at NICE, told the Telegraph: "We think this guideline will discourage unnecessary referrals and treatment.

"There is over referral of babies with nothing wrong with them and probably over treatment in babies who do not require it.

"A lot of this is about the relationship between the baby and the mother and the mother's reaction to anything unpleasant or abnormal happening to the baby.

"This guideline will empower GPs to reassure mothers there is nothing is wrong and they will get better on their own."

The guidelines recommend that bottle-fed babies be given smaller more frequent feeds, or special thickened formula that helps the milk to stay in the stomach, in the first instance. If that does not work then infant Gaviscon or similar can be tried.

In breastfed babies the first treatment should be infant Gaviscon or similar.

Only babies who are distressed, have unexplained feeding problems or faltering growth should be given a four-week trial of drugs, ranitidine or omeprozole, to see if there is an improvement, according to the guidelines.

Hayley worries that if this guidance had been in place when she was trying to get Nathan's condition diagnosed, he would not have received the treatment that has helped ease his symptoms.

"Nathan never had 'faltering growth,' he was always gaining weight because he would comfort eat," she explained. "So if Nathan was in that situation now, he wouldn't be given any medicine, even though the acid in his throat was so bad that it was causing him to choke and stop breathing.

"I can understand that they don't want to give medication out unnecessarily because of the costs to the NHS and I completely agree with that, but each case needs to be taken on it's merits.

"No parent ever wants to give their child medication. I did not want to be filling Nathan's little body with medication, I felt awful about it. But when I see him now compared to what he was like, it's the only thing that's worked for him."

Hayley's aim is for her petition to receive 100,000 signatures so that it can be brought before Parliament.

"I want to see as many signatures as possible, so that the petition makes a big impact," says Hayley.

"The response we've had so far has been fantastic. We've even had a few celebrities get on board via Twitter. We've had Paddy McGuinness, Coleen Nolan, Natasha Hamilton, Ola Jordan and Sherrie Hewson all tweeting the link to the petition, and Kym Marsh contacted me to say good luck as her little girl had reflux and she knew how awful it was."

The petition can be signed at: epetitions.direct.gov.uk/petitions/68614.

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