Part 2. Baby Darcy has a conditioned dialling up with breastfeeds which has been misdiagnosed as gut pain, allergy, reflux, tongue-tie, and suck-swallow-breath dyscordination. This is how her speech pathologist mother resolves it.

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.

In Part 1 of this story, I listen to Adrienne describe the feeding difficulties she's had with her 15-week-old daughter Darcy since her birth, the various diagnoses Darcy has been given, and the things they've has tried. You can find Part 1 here.

Now, my first step is to perform a thorough oromotor assessment.

Everything is normal. Darcy has no visible membrane under the tongue and a frenulum that sits out only a small way along the undersurface of the tongue. Her little tongue follows my finger as I run it along the lower gum, from one side to the other, and she pokes out onto her lower lip when I place my finger there.

“The lactation consultant said she could feel the restriction when she ran her finger along the undersurface of the tongue,” Adrienne comments, doubtfully.

"That's why she sent me to the chiropractor." Adrienne has placed her hands on either side of her little daughter's head, as I'd asked, holding her reasonably still as I examine her mouth.

“It's true that we might feel the presence of some frenula that way,” I say. “But that doesn't tell us anything meaningful. Oral connective tissues are as diverse as humans,” I observe. “Darcy has a very normal frenulum, with normal tongue movement. Baby frenula and tongues come in a whole range of shapes. Sometimes, the frenulum under the tongue attaches towards the tip of the tongue and requires a snip, but not in Darcy’s case.”

Darcy is happy kicking and gazing at us from the nappy-change mattress on my examination couch, and I perch on the couch beside her for a moment. Now Adrienne is standing in front of her baby, holding that little foot and sending smiles of encouragement every now and then, as we talk. Darcy watches us both and kicks her legs happily.

“So you don't think she needs laser treatment?” Adrienne asks, confused.

“No, I don't. She doesn't need any kind of frenotomy. You see, her tongue isn't tied. And I'd be worried that if you went ahead with laser treatment, she could develop even worse feeding problems, because we know that is one of the side-effects of frenotomy sometimes, most especially with laser because it goes deeper.”

“So what do you think is going on?”

“I think Darcy has developed a conditioned dialling up at the breast. Another way of thinking about this is that she has become very sensitive at the breast. I often explain it to parents in this way. Darcy has a very powerful biological drive to breastfeed, but things haven't always gone easily for her with the breastfeeding, and as a result she has developed a habit of her sympathetic nervous system going into over-drive whenever she is at the breast, a conditioned association. Each time she is at the breast she gets very tense … I want the breast, I want the breast ….. “ – I hold my hands up as if I am the baby and am frightened – “but is it going to work? I'm worried it isn't going to work! She gets tense and starts to dial up as soon as she knows a feed is going to happen, or soon after she's on, and she can't relax anymore at the breast. She has become very sensitive …..”

I can see Adrienne's eyes filling with tears. “That's exactly it,” she says. “It's conditioned now.”

“Although I can never promise,” I say carefully, “this can often be repaired. It will just mean experimenting with some approaches that sound very different to what you've been told elsewhere.”

Adrienne nods, listening.

“You know how it is”, I say, “there’s so much conflicting advice. It’s no-one’s fault, it’s a health system problem, much bigger than any parent or health professional.”

“So much conflicting advice!” Adrienne says, emphatically. “It’s just outrageous, it’s awful!”

I sigh, and pause for a moment. This amount of conflicting advice would not be tolerated, I am certain, for health-related problems at any other time in the lifespan.

“So you’ll just keep experimenting, which is your family’s great strength and resilience. All that experimenting. You’ll try out things I say, and if something doesn’t seem right for you and Darcy, you’ll try something else. You know your baby the way no-one else does. … Anyway, the first step is to make sure your little one never feels under pressure when she is at the breast. This is extremely hard to do when you are naturally so worried about her weight and even how hydrated she is! We are hardwired from an evolutionary point of view to feel very very worried when feeds are not going well. Something primal in our brain believes it is our responsibility to get milk in, and that if we don't succeed in this, our baby will die! It's that ancient, that hardwired!”

Adrienne is wiping away tears, still nodding.

“So then it is normal to start accidentally applying a little pressure: 'come on sweetheart, take some more, let's just get a bit more in!'. But unfortunately, that pressure around feeds, which is absolutely normal for a mother because she so much wants to do the right thing by her baby, can back-fire and cause a conditioned dialling up.”

“It's so true,” Adrienne says. “I was almost force-feeding her a lot of the time, I was so worried she was losing weight!”

My heart goes out to these devoted, hard-working parents, who are trying so incredibly hard to do what's right for their baby in the midst of a world overflowing with unhelpful information.

“That's such a normal response!” I exclaim. “Of course! You are trying to protect her!”

“So the very first thing we need to do is to take all pressure off any feed.” I describe to Adrienne what frequent flexible feeds are, how most women need to offer at least 12 times each breast in a 24 hour period (but not counting!), how the feeds may not go for long, how you can't overfeed the baby, and how there is no pressure to get milk in on any particular occasion.

“Think of the breast,” I say, “not as a time for a filling meal, but as a way to keep Darcy dialled down, as a tool for making the days as easy and as enjoyable as possible.”

“That's so different to what you hear!” Adrienne says. “I was always watching the clock trying to get 15 minutes each breast or whatever. I'd freak out if she was only on for five minutes …”

“I know,” I say. “But actually, babies feed for both sensory nourishment and for milk, and we can't really distinguish between the two. We just use the breast as one of our two tools to make the days as easy as possible.”

I continue. “The second tool, rich and changing sensory motor nourishment, is particularly important from now on for a baby like Darcy with a conditioned dialling up. Rich and changing sensory motor nourishment tends to keep baby dialled down, which helps feeds go better. Sometimes women have even noticed that feeds go better when they are out.” Adrienne is listening carefully, still bending over and kissing Darcy sometimes, or playing with her little hands.

"But mostly, when you have feeding problems, you don't even want to leave the house! That's so normal, too! You feel exposed if she starts crying and fussing when you try to breastfeed when you're out. You don't have the breast working as an easy tool to keep her dialled down." Adrienne nods in agreement.

"And often when we are inside the low sensory interior of our homes, we are thinking the baby is dialling up because she isn't satisfied at the breast, and needs more milk. But it may actually be that the little one needs a change of sensory motor nourishment.” As if to prove my point about enjoying new sensory motor experiences outside the home, Darcy is gazing up at us and burbling happily.

“So, often babies have had enough at the breast for now, but the mother is thinking oh no, that's not a long enough feed, or there wasn't much milk transfer, and she keeps on trying to breastfeed.

“Then at her age, 15 weeks, Darcy will be increasingly distractible at the breast. This is normal. Once the fit and hold is working well, you'd be surprised at how much milk a baby of Darcy's age can take from the breast in a short period of time! If a mother is happy to go with this, and offer very frequently and flexibily, the baby will take all she needs over a 24 hour period. You can see that going into a quiet dark room could actually make the conditioned dialling up worse, because Darcy is wanting richer environmental experience …”

“This is so different to what you hear!” Adrienne observes again. “The child health nurse was insisting that she was overtired and overstimulated and that was why she wouldn't feed, and wouldn't go to sleep.”

Often after an oromotor examination I suggest that the woman offers a breastfeed, so that I can see what has been going on. But in a situation like this, when it is likely there has been positional instability and breast tissue drag from birth, the baby very quickly dials up at the breast. We need to be as prepared as possible in the consultation before attempting to bring her, so that we are not simply reinforcing the baby's distress. Often, when there’s a severe conditioned dialling up, I ask the woman to give me an idea of what she usually does when she brings her baby to the breast, staying fully clothed and holding a doll. But Adrienne decides she’d like to show me what she has been doing with Darcy by directly offering her breast.

I hold Darcy and have a little conversation with her while Adrienne sits on the couch and nervously prepares, rolling down her black singlet bra, taking the breast pad out and tucking it away.

“I know this is going to sound weird,” I say casually, “but our babies really don't swallow much air with breastfeeding. I know this from the research. We actually don't need to burp our babies.”

Adrienne glances at me incredulously as she unbuttons her shirt. “Are you serious?”

I nod wryly. “I know everyone tells you the baby is fussing because she has swallowed too much air, and that you've got to burp her and hold her upright, but it is a misconception. Babies will relieve themselves of any gas they have swallowed no matter what position they are in. But they are not swallowing a lot of air, even when they have breastfeeding problems.”

Adrienne says: “So the whole concept of pacing the breastfeeding, pausing to burp, isn't right?”

I pull a face. “It really doesn't help – or have any scientific basis. And worse, regularly disrupting her like that when she is breastfeeding can worsen a conditioned dialling up. She just wants to keep on feeding.” Adrienne has paused from her preparations while we talk.

“And my speech pathologist friends are sure she has suck-swallow-breath dyscoordination …?” She trails off.

I know that there's a lot of confusion about the idea of suck-swallow-breath dyscoordination. Some health professionals believe that there are predictable ratios of numbers of sucks before a swallow. They talk about nutritive and non-nutritive sucking. But the research demonstrates that suck-swallow ratios are quite irregular in successfully breastfeeding babies. And the number of sucks which will result in enough transfer of milk to require a swallow depends mostly upon letdowns, and on how much milk is in transit in the milk ducts even when there isn't a letdown - which is highly variable between women. I don't try to say all this.

“Unless the baby has a true neurological condition or is still premature, the concept of suck-swallow-breath dyscoordination is also unhelpful. Darcy won't have a problem coordinating her breathing and swallowing, but she it’s quite likely she’s been working very hard to manage nipple and breast tissue drag. We'll take a look and see.”

Adrienne sighs. She takes her little daughter, chatting to her brightly. “What do you think Darcy-girl?” she asks. “D'you want boobie?” Darcy smiles back at this mother whom she adores with every cell in her little body. Adrienne begins to bring her on, using a method which puts the baby in the crook of the arm low under the breast, then rolls the baby's face up and on. As soon as she lies Darcy down in the crook of her arm, Darcy's smile is gone and she begins to cry and pull back in anticipation, pushing against Adrienne with her small hands.

“She's so smart, she knows what you're about to do!” I murmur.

Adrienne is sitting upright, or if anything leaning forward to help the breast fall forward when the baby comes on. I recognize this method. One positive aspect of this particular approach to fit and hold is that it is aiming for a symmetrical face-breast bury. However, unless a woman has a breast of a certain suitable size and shape, this approach may result in nipple and breast tissue drag problems, and what I refer to as landing pad encroachment. There needs to be a ten centimetre diameter of breast exposed around the nipple and areola for the baby’s face to ‘land’ on, and having baby in the crook of one’s arm can interfere with that. As one midwife commented to me about this method: “It works if you have an average breast! Unfortunately, most of us don't.” The gestalt method, which I created over years work in the clinic with women, responding to their feedback and what we noticed with the baby, aims to work for all women, regardless of breast shape and anatomic fit with the baby.

Darcy's forehead is pressed against Adrienne's upper arm. Now Adrienne experiments with another approach, as Darcy fusses and pulls back. Adrienne holds Darcy with her right hand tight across her upper back, the right forearm tucked under her head and drawing her in. She is using her left hand to lift and shape her breast. Darcy seems to come on for a moment, and Adrienne pulls Darcy's lips out into a K shape, holds Darcy's hands out of the way, and then rests her left hand very gingerly on Darcy's bottom, not wanting to upset the baby further. Soon Darcy's back sways out and her legs flail in the air as she dials up.

I can see that Adrienne is pulling Darcy’s little face in and up in a way that drags the nipple upwards, significantly higher than it wants to fall naturally in response to gravity. Adrienne doesn't have much control over Darcy’s face-breast bury because of the way she is holding Darcy, still in the crook of her arm with Darcy's forehead up against Adriene's upper right arm. I suspect that Darcy has been trying to deal with landing pad encroachment and breast tissue drag from the beginning of breastfeeding. She is struggling and crying at the breast now, and we quickly stop.

Adrienne looks at me, distressed.

“Well, that isn't suck-swallow-breath co-ordination problems. It isn't aspiration. It isn't reflux or allergy or connective tissue tightness. But there is underlying breast tissue drag, that's probably become more and more of an issue as she has grown longer and bigger. Darcy is unstable in the way she is positioned at the breast, and has developed a conditioned dialling up as a result, because the feeds have been so difficult for you both.”

We move into working together with the gestalt method of fit and hold. There’s so much to discuss, including how babies don’t need to flange their lips when breastfeeding successfully. I explain we want Darcy’s lower face so buried into the breast that we can’t see her lips. I show Adrienne a short video and some photos of what a stable position might look like, and how to get there. I encourage Adrienne to tune into her nipple’s sensations, and to experiment with responding to Darcy’s communications with micromovements in different directions, horizontally, vertically, and by changing the angle of Darcy’s face-breast bury.

We also talk a lot about strategies for repairing Darcy's conditioned dialling up. We talk about Darcy’s sensory motor needs, and also what Adrienne might do to help make the whole sleep situation much easier and more enjoyable. I am inviting Adrienne to make sense of Darcy’s behaviours in ways that are quite different to what she’s heard, and to experiment with these new ideas. We finesse everything in a second consultation just a few days later.

Three weeks down the track, Adrienne and Darcy are enjoying the days and nights together, and enjoying their breastfeeding relationship. Not every mother-baby pair turns things around this quickly, and at four months of age it’s sometimes not possible to resolve a conditioned dialling up because it’s become so entrenched - but thankfully, things go well for Adrienne and Darcy. The baby's weight gain is improving, too.

"My life is completely transformed," Adrienne tells me.