When is inconsolable crying a sign of something worse? Parents aren’t getting the advice they need | Rhiannon Lucy Cosslett

Bcolic. We know that. But some cry dramatically more than others. Many parents have had the experience of their inconsolable child being told that they have “colic.” They assume that it is a real, diagnosable medical condition, when in reality it is a catch-all term for excessive, unexplained crying, and while it can dramatically impact the early parenting experience, they may never understand why it happens.

Several friends with babies with “colic” had babies who screamed in extreme pain, were impossible to put down, and never slept. Several spit up milk after every feeding, but not allIt turned out that these babies actually suffered from reflux. While all of us new parents were in the trenches, these parents had it much worse. They were exhausted, stressed, and felt powerless to soothe their children. Reflux—when milk, food, and stomach acid flow from the stomach into the esophagus—is common in infants and usually doesn’t require treatment. However, some do develop complications.

“I was told it was ‘normal for children to spit up,’” says Sophie, who recalls how her son suffered from gastroesophageal reflux disease (Gord), a more severe type of reflux. “As a new mother, you might think I’m imagining things.” Yet he screamed and screamed and only seemed comfortable when held upright. Despite feeling “gassed,” Sophie kept calling her GP for help and got nowhere. “I knew something was wrong,” she says. When she visited her parents abroad, they were so alarmed by the baby’s symptoms that they went straight to a paediatrician, who diagnosed Gord and prescribed medication. Within 10 days, he was spitting up less, could lie on his back and was sleeping through the night.

“Mothers know,” says Prof Mike Thomson, a paediatric gastroenterologist, who explains the signs and symptoms of Gord to me. “But whether you get referred depends on the level of training of the GP. At the moment we see a delay in diagnosis, (it takes) four or five visits, which is a period of months… The disease and its symptoms need to be better understood.”

Many GPs are brilliant, but Sophie is not the only parent who feels fobbed off by a lack of understanding in the GP practice. Jen was repeatedly told her daughter had colic, but her symptoms were so severe they couldn’t leave the house: “You feel like a terrible mother. There’s nothing you can do to help. It’s awful.” When the symptoms continued into the fourth trimester, Jen was told it was reflux and her baby was prescribed Gaviscon, which did nothing.

It was eventually a “whisper network” of other parents who suggested that an allergy might be the root cause of her baby’s suffering. After being told it would be six months before she would get an NHS referral, Jen desperately paid to see a private doctor, who diagnosed her baby with a cow’s milk protein allergy. “He was the first doctor who was concerned about my wellbeing,” she says. “Looking back, it was just a heartbreaking, exhausting, lonely time where I felt like everyone kept saying, ‘Oh, dairy allergies are really rare, reflux will go away on its own.’ It’s only rare if no one diagnoses it.”

A look at the parent support group Living with reflux shows the impact Gord can have on the whole family. It’s a story that’s as much about mental health as it is about physical health, and how mothers’ concerns are minimised and ignored. Dr Robert Heuschkel, a consultant paediatric gastroenterologist in Cambridge who is trying to set up a children’s hospital there, tells me that GPs and paediatricians need to pay as much attention to the impact on parents’ mental health as they do to symptoms such as vomiting blood or difficulty breathing.

At the same time, Heuschkel believes that reflux is overdiagnosed and proton pump inhibitorsthat reduce acid production in the stomach, are overprescribed. I ask him if modern parenting culture means some are less willing to accept uncertainty, or crying as a normal part of development. Some parents want answers and a diagnosis – and will push for it even when tests find nothing wrong, he tells me. “Colic was that catch-all term. You have a bit of a miserable child who screams for two hours at the end of the day. We don’t really know what it is … but it’s nothing serious. You scream a bit for a few months and then it goes away and that’s the end of it. Now it’s a trip to the GP and ‘give me something that works’.”

Anyone who has experienced hours of unexplained crying can understand the desperation doctors feel for a solution, but the challenge doctors face is how to help the babies who need it without overtreating or medicating babies who aren’t really sick. What’s also true is that excessive crying can be caused by a variety of different factors, not all of which are mentioned in this piece, and which are often notoriously difficult to pin down. When a parent’s mental health is suffering, it’s even more important to find the true cause of the crying. “There’s no point in just saying it’s nothing. It is something: It’s leading to illness in the mother. And that’s obviously terrifying and very debilitating,” Heuschkel says.

Both advisors tell me that there needs to be a better understanding of dairy allergies, which share some symptoms with reflux, and that medication should be reserved for the most severe cases and prescribed by paediatricians. Changing the diet – the frequency and amount, or the presence of dairy in it – is often much more effective, they say. Jen wishes there had been more information in antenatal classes and postnatal visits so that parents could recognise what was normal and what wasn’t. Everyone agrees that the NHS needs to get better at diagnosing allergies in babies. A honest conversation about colic and the limits of the term have long since been exceeded.

What works
After I wrote that my toddler loves classical music, a number of readers recommended the Story Orchestra series, which intersperses the music with beautiful illustrations. Both Peter and the Wolf and In the Hall of the Mountain King have become instant hits.

What not
Childless cat lady discourse. As a former childless cat lady – and someone who wrote a book about this oldest prejudice – it is insulting that these misogynistic stereotypes are still being perpetuated. But as we know, when women are at risk of gaining too much power, the witch hunts begin.