Part 1. Baby Darcy has a conditioned dialling up with breastfeeds which has been variously misdiagnosed as gut pain, allergy, reflux, tongue-tie, and suck-swallow-breath dyscoordination. Her mother (who is a speech pathologist) tells the story.

Disclaimer: the case below is an amalgam of multiple cases that have presented to me, and is not derived from any specific or identifiable mother-baby pair who have seen me as patients. Needless to say, all names are fictional.

“She's 15 weeks old, our second,” Adrienne says, looking at little Darcy who is asleep in the pram. The baby has short fine dark hair, like her mother's, and is slender though not too thin, I notice, on a first glance.

“I breastfed our eldest, Henry, until he was two and we never had any problems really. I hadn't imagined for a moment that I'd have problems this time round with Darcy.”

But right from the beginning, Darcy has been prone to fussing at the breast.

“Some feeds went beautifully, but at other times, perhaps a couple of times a day in the beginning, Darcy wouldn't want to come on. Or she'd come on and then pull off after a short period of time, upset. Or she might breastfeed for just a few minutes then begin back arching and pulling back, coming in to suckle desperately, until she finally pulled off altogether.

“It's been getting worse over the past six weeks. Now every breastfeed is like this, right throughout the feed.”

Adrienne is a speech pathologist who works in a large children's hospital with families who have infant feeding problems. She's tried many of the usual speech therapist strategies, including 'pacing' the baby by taking her off after a few minutes of feeding, to give her a break and to burp her.

“She swallows a lot of air,” Adrienne explains.

And Darcy won't take a bottle. They've really tried. She has been dropping percentile lines and is now 1.5 lines below her birth weight. The local child health nurse is keeping an eye on this.

I take a detailed history.

"How often do you offer her the breast in a 24 hour period, would you say?” I ask.

“Well I'm demand feeding,” Adrienne explains. “It used to be every couple of hours during the day and a few times in the night. But now I'd say every three hours.” I nod.

“Does she take both breasts when she feeds? Or roughly how often would she take each breast in a 24 hour period, do you think?”

Adrienne gives this some thought. “It varies, so it's hard to say …. But maybe half the time, she'll take both breasts.”

In the medical records, I type: about six feeds each breast in a 24 hour period. This is a recipe for low supply – and of course, results from the baby dialling up at the breast like this, so that breastfeeding is an unhappy experience for both of them.

Adrienne adds: “But now that things are this bad Darcy goes for four or five hours during the day without breastfeeding, and it makes me really worried. She must be so hungry! So sometimes it's less.”

I nod.

“Once, after Darcy went about six hours without a breastfeed during the day, I dropped Henry off at a friend's and went into the Emergency Department, I was so worried. But they sent me home, suggesting that if she wouldn't breastfeed in the next few hours, I should offer her a bottle. Since then, I've been trying to pump as well, to keep my supply up. I use a hakkaa during the feeds, to collect milk.”

I continue typing notes into the electronic medical records, standing at my height-adjustable desk, pausing regularly to listen and make eye contact.

“Ah,” I say. “And what happens through the night?”

“Still waking every couple of hours. Sometimes she'll take the breast, other times she refuses and we just rock her back to sleep. We can be awake for an hour or more two or three times in the night.”

On the whole, breastfeeds seem to go better at night.

“To tell the truth,” Adrienne continues, “the only way I've been able to get Darcy to feed for any length of time is when she is waking up from a sleep, whether that's during the day or at night. I often try to go into a quiet dark room during the day, but that's hard with Henry. I have to leave him by himself in front of TV.”

“The paediatrician is also worried about Darcy's weight,” Adrienne says. “She put me on to a cow's milk and soy free diet last week, and we started reflux medications, too, because of the back arching and puking during feeds. It does seem to have helped, although it's hard to say whether it's the elimination diet or the losec.”

I am not surprised that Darcy is taking medications. Allergy, reflux, and tongue-tie are the most common diagnoses inappropriately applied to babies who are struggling with positional instability or a conditioned dialling up during breastfeeds.

Adrienne has been staying at home the last week or two, and trying to get into feed play sleep cycles, as the child health nurse advised.

“It's hard though because her brother's needs aren't being met, and now Henry is throwing temper tantrums and being difficult to manage.” Worse, Darcy is now not only fussing with feeds, but irritable all day long.

“She's overtired a lot of the time, probably because she is so hungry.”

I look at her and shake my head slightly, in sympathy. “This is so difficult!” I murmur, typing.

“Darcy has terrible gut pain,” Adrienne continues. “I've tried everything, and I think the child health nurse is right, this is the problem. She gets very upset at the breast, and then she passes wind. I've been burping her regularly throughout the feeds. The child health nurse advised this too. Darcy seems to take more from the breast when she is burped.”

To try to help with Darcy's gut problems, Adrienne holds her upright after feeds on her shoulder for twenty to thirty minutes. It takes them an hour or more each time they wake at night to feed, hold upright, and settle the baby in the cot again.

Adrienne has also been trying to hold Darcy skin-to-skin in the bath. It didn't help.

The lactation consultant she saw recently said the fussiness at the breast was due to a posterior tongue-tie, and if Adrienne didn't have it released, Darcy was at risk of speech problems, sleep problems, and orthodontic problems down the track. The lactation consultant said Darcy had bags under her eyes, a tight mouth, and narrow cheeks consistent with restricted oral connective tissues.

“That really upset me,” Adrienne says. “Before that, I just looked at her and thought she was so beautiful! Now I look at her and worry that she's got these connective tissue problems and what the effects might be long-term.”

She sighs. “And I might as well tell you, I have a couple of close girlfriends who are speechies too. And they've been watching us feed and saying that she has obvious suck-swallow-breath co-ordination problems. One of them even thought she might be aspirating. Sometimes she does cough, especially with my letdown.”

“I really can't keep on going like this,” Adrienne repeats finally, with quiet but intense emotion. “I'm thinking I need to wean her. But I really want to breastfeed. And anyway, I can't wean her because she won't take the bottle. That's why I'm here.”

I take a deep breath and meet Adrienne's steady gaze, reflecting upon her courage. “You've done everything,” I say quietly. “Truly, it's amazing what women do for the sake of their children's well-being.” She is grateful, I think, for that moment of recognition.