Babies cry. This we know. But some cry dramatically more than others. Many parents have the experience of being told their inconsolable child has “colic”. They assume it’s a real, diagnosable medical condition, when really it is a catch-all term for excessive, unexplained crying, and even though it can dramatically affect the experience of early parenthood, they might never understand why it’s happening.
Several friends with “colicky” babies had infants who seemed to be screaming in extreme pain, were impossible to put down, and never slept. Several would spit up milk after every feed, but not all of them. It turned out that these babies actually had reflux. While all of us new parents were in the trenches, these parents had it far worse. They were exhausted, distressed, and felt powerless to soothe their children. Reflux – when milk, food and stomach acid flow from the stomach into the oesophagus – is very common in babies, and doesn’t usually require treatment. Yet for some, there are complications.
“I was told ‘it’s normal for kids to spit up’,” says Sophie, recalling how her son suffered with gastro-oesophageal reflux disease (Gord), a more serious kind of reflux. “As a first-time mum, you think maybe I’m just imagining things.” Yet he screamed and screamed, and only seemed comfortable when he was held upright. Despite feeling “gaslit”, Sophie kept asking for help from her GP and getting 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 immediately went to a paediatrician, who diagnosed Gord and prescribed medication. Within 10 days he was spitting up less, able to lie on his back and sleeping through the night.
“Mothers know,” says Prof Mike Thomson, a consultant paediatric gastroenterologist, who talks me through the signs and symptoms of Gord. “Yet whether you get referred is dependent on the education level of the GP. At the moment we are seeing a delay in diagnosis, [it’s taking] 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 isn’t the only parent who has felt fobbed off by a lack of understanding in general practice. Jen was repeatedly told her daughter had colic, yet her symptoms were so extreme that they were unable to leave the house: “You feel like a terrible mother. There’s nothing you can do to help. It’s horrible.” When the symptoms outlasted the fourth trimester, Jen was told it was reflux and her baby was prescribed Gaviscon, which did nothing.
It was ultimately a “whisper network” of other parents who suggested an allergy might be the root cause of her baby’s suffering. After being told it would take six months for an NHS referral, in desperation Jen paid to see a private doctor, who diagnosed her baby with a cows’ milk protein allergy. “He was the first doctor who was concerned for my wellbeing,” she says. “In retrospect, it was just a harrowingly exhausting, lonely time where I felt that everyone just kept saying to me: ‘Oh, dairy allergies are really rare, reflux goes away on its own.’ It’s only rare if no one’s diagnosing it.”
A glance at the parents’ support group Living with Reflux shows the impact that Gord can have on the entire family. It’s a story that’s as much about mental health as it is about the physical, 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 should be on the lookout for parental mental health impact just as much as they are for symptoms such as vomiting blood or breathing problems.
At the same time, Heuschkel believes that reflux is being over-diagnosed and proton pump inhibitors, which reduce acid production in the stomach, overprescribed. I ask him if modern parenting culture means that 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 that even when investigations find nothing wrong, he tells me. “Colic was that catch-all phrase. You’ve got a bit of a miserable kid who yells for two hours at the end of the day. We’re not really sure what it is … but it’s nothing serious. You have a bit of yelling 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 dealt with hours and hours of unexplained crying can understand the desperation for a fix, but the challenge doctors face is helping the babies that need it while not over-treating or medicating babies that aren’t actually unwell. What is also true is that excessive crying can be caused by a myriad of different factors, not all mentioned in this piece and, often, notoriously difficult to pinpoint. When a parent’s mental health is suffering, finding the true cause of the crying is even more important. “There is no point in just continuing to say it’s nothing. It is something: it’s leading to disease in the mother. And of course, that’s terrifying and very debilitating,” says Heuschkel.
Both consultants tell me that there needs to be better understanding of dairy allergies, which share some symptoms with reflux, and that medication should only be reserved for the most severe cases and prescribed by paediatricians. Changing the feed – the frequency and quantity, or the presence of dairy within it – is often far more effective, they say. Jen wishes there had been more information in antenatal classes and postnatal visits, so that parents can recognise what is and isn’t normal. Everyone agrees that the NHS needs to get better at diagnosing allergies in babies. An honest conversation about colic and the limits of the term is long overdue.
What’s working
After I wrote that my toddler loves classical music, a number of readers recommended the Story Orchestra series, where the music is juxtaposed with lovely illustrations. Both Peter and the Wolf and In the Hall of the Mountain King have been instant hits.
What’s not
Childless cat lady discourse. As a former childless cat lady myself – and one who wrote a book about this oldest of prejudices – it’s insulting that these misogynist stereotypes are still wheeled out. But as we know, when women are in danger of having too much power, that’s when the witch-hunts begin.