Your Family

Failed by the health system: my daughter and her undiagnosed reflux

So much of our healthcare experience depends on who you meet along the way

My scant medical knowledge triggered an early warning bell. This wasn’t normal behaviour. Could this be infant reflux? Photograph: iStock

Louise Ní Chríodáin
Tue Mar 3 2020 - 06:01

I can still hear his words, delivered with a dismissive chuckle: “Breastfed babies don’t get reflux.”

Our eldest was a gorgeous newborn; alert, quick to smile and laugh, but even faster to cry.

The colic persisted for over three months. She screamed between 7pm and 11pm, or 7pm to 2am, every night without fail, alternating between stretching her entire body out rigid, or pulling her legs up to her chest.

As any parent who has endured colic knows, the usual comforters don’t work. Rocking, feeding, soothers, driving, running up and down stairs, may give you a minute or two of a breather, but the crying will start again.

READ MORE

Even during non-colic hours, she slept very little, waking and feeding frequently through the night, crying if laid down into a basket or cot, wanting to be held – stretched out on her side across our arms or laps, or upright, with her head on our shoulders.

Exhausted

Desperation made us try every suggestion: simethicone drops, homeopathic remedies, cranial osteopathy... In the end, the only cure was time. One evening at 7pm she didn’t cry. Like so many parents, we survived colic rather than cured it.

Emerging exhausted from those three months we thought naively that sleep would follow – for all of us. But her dislike of lying flat, or napping, or staying asleep continued. On walks in the pram she might start to scream, inconsolable, back arching in apparent pain, until she was picked up. Even nappy changes were difficult if she was in discomfort. She regularly possetted or threw up. When we fed and put her down at night, we listened out, dreading the telltale cough that pre-empted a vomit, and a change of babygrow and bed clothes.

My scant medical knowledge triggered an early warning bell. This wasn’t normal behaviour. Could this be infant reflux? The GP at our local walk-in surgery dismissed the suggestion. “Breastfed babies don’t get reflux.”

I repeated the same mantras for months, with other doctors, at breastfeeding clinics, at the public health checks – which noted that she wasn’t gaining weight and called us back for regular weigh-ins:

“She throws up sometimes after feeding, and often when we put her down at night;”

“She hates lying flat;”

“She won’t nap, unless she falls asleep in the car or buggy, or upright in our arms;”

“She wakes every hour and a half at night crying.”

I sensed they thought I was exaggerating – I wasn’t. Who said what has blurred into a montage of shoulder shrugs, subtle eye rolls, subject changes, sympathetic nods as I was being shepherded towards the exit door, and comments like: “If she had reflux she wouldn’t be keeping anything down.” I stopped voicing my concerns. These were the baby experts, after all, not me.

Sleep deprived, I didn’t think rationally and continue to seek help or information. In 2002 there were no smartphones, no easy access to Dr Google or forums and support groups. An internet search required cranking up a screeching modem in the spare room.

Instead we got on with it. We kept multiple changes of linen and clothes in the nappy bag, and beside the cot. I never left the house without the sling, ready for quick transfers from the pram or car seat. At home I wore her in that sling for hours, until a chance present of an inflatable baby seat finally gave her a comfortable perch, and she gurgled happily as I worked around her.

I stumbled through each day in an adrenaline-driven euphoria, waiting for “the routine” to kick in. It never did. We tried introducing formula milk, thinking it might settle her. It didn’t. We resorted to controlled crying techniques – awful and unsuccessful. One of the lowest moments was when a good friend – a mother herself – told me that it was probably all my fault. I was holding her so much she could sense my tension.

Vomiting

By the time she was eight months old any functioning brain cells were reserved for the respite of work. I repeated my mantras to the creche manager. She wouldn’t settle in a cot and nap like the other babies, so I took her for lunchtime walks to prompt sleep. Back in the creche and snoozing in her buggy she coughed a few times and threw up. I was called to take her home: “That’s not normal. She needs to see a doctor.”

“Childhood asthma,” pronounced the same GP confidently, when I told him the creche staff didn’t deem the coughing and vomiting “normal”. “It’s very common. She’ll probably grow out of it,” he told me, his hand reaching for the prescription pad. My suggestion of reflux once again dismissed.

We grabbed on to the hope the diagnosis might be a turning point, and held her down four times a day to administer an inhaler, as she struggled to push the spacer off her face. Her symptoms didn’t improve. “It takes a while,” we were assured.

Unconvinced, I booked to see a GP who specialised in asthma treatment. By the time we saw him she was nearly a year old; a poor eater, but vomiting less often, and sleeping for slightly longer periods. Her days were now spent mainly upright, having decided that the best mode of transport was to shuffle around on her knees.

After listening carefully to her history, and posing a series of questions, he asked: “Do you think she has asthma?”

“No.”

“What do you think she has?”

“Reflux?”

“That’s what I think too, and she’s growing out of it. It’s what usually happens around this age.”

I know now that antacids might still have eased her discomfort. She wasn’t one of the babies to grow out of it before she was one; or perhaps the sleep patterns were too firmly entrenched. She continued to wake every couple of hours. In two years there were only two occasions when we celebrated a six-hour sleep. Once again with hindsight I know I should have pursued further help. But worn down we accepted it as our lot.

So much of our healthcare experience depends on who you meet along the way. In addition to the great and the good, there are also the bad and, all too often, the oblivious or indifferent. The shoulder shrug isn’t just reserved for first-time mothers, and fathers.

I can only hope that our experience would not be repeated today, that parents who suspect their child has silent reflux – or any condition – aren’t fobbed off. Eighteen years on, our baby’s stomach issues follow her into adulthood. And I still have my own gut reaction. I start and abandon this article a number of times. She’s not the only one carrying the legacy of undiagnosed reflux. My head might tell me that she was failed by her earliest encounters with our health system. My heart still believes she was failed by her mother.

Maybe this means we both were failed.

Infant reflux explained

Infant gastroesophageal reflux is when the stomach contents are regurgitated back up into the baby’s oesophagus (the long tube from the stomach to the mouth). This may lead to vomiting.

It happens in babies when the valve that separates the stomach from the oesophagus has not matured, and does not close properly. This means that milk and stomach acids flow back up into the oesophagus after feeding.

It causes problems when the baby vomits excessively and does not get sufficient nourishment, and when stomach acids cause discomfort and pain.

Some babies may not vomit much, or at all, so reflux may not be suspected. This is known as silent reflux. However, they may dislike being laid flat, and cry and display signs of pain usually about an hour or more after feeding.

Because of the discomfort they experience, babies with reflux will often wake frequently at night.

As the stomach valve matures, reflux usually reduces. Most babies will grow out of it completely by the time they reach one year of age.

Treatments include food thickeners to stop the milk being regurgitated. These mix with milk in the stomach if you are breastfeeding, or come as thickened formula feed if you are bottle feeding. Antacids may also be given to suppress the production of stomach acids.

According to the HSE, your baby may not show any signs of reflux or they may show the following signs:

  • Spitting up milk during or after feeds.
  • Refusing feeds, gagging or choking.
  • Persistent hiccups or coughing.
  • Excessive crying or crying while feeding.
  • Frequent ear infections.

You do not need to be concerned about reflux if your baby is feeding well, happy and gaining weight as normal.

Contact your public health nurse, GP or midwife if reflux starts after six months of age, continues beyond one year, or your baby has any of the following problems:

  • Spitting up feeds frequently or refusing feeds.
  • Coughing or gagging while feeding.
  • Frequent projectile vomiting.
  • Excessive crying or irritability.
  • Green or yellow vomit, or vomiting blood.
  • Blood in their poo or persistent diarrhoea.
  • A swollen or tender tummy.
  • A high temperature (fever) of 38C (degrees Celsius) or above.
  • Not gaining much weight, or losing weight.
  • Arching their back during or after a feed, or drawing their legs up to their tummy after feeding.

If you are breastfeeding and you are concerned that your baby may have reflux, you should speak with your public health nurse.

It is worthwhile having your feeding technique, positioning and attachment checked.

If your baby is on infant formula, speak to your public health nurse to make sure that they are taking the correct amount of formula for their age.

To help their symptoms, try:

  • Offering smaller but more frequent feeds instead of a large volume in one go.
  • Feeding in a more upright position.
  • Winding regularly during a feed.
  • Holding your baby upright for a while after feeding.