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.

From positional instability at the breast, to conditioned dialing up with the bottle, to a nasogastric tube

Jamie is 12 weeks old, with a two-year-old big sister. He is fed by extensively hydrolysed formula by a nasogastric tube, inserted by his paediatric gastroenterologist during a hospital stay a week ago.

“I've probably come too late,” his mother Cynthia says. “But I'd like to know what you think anyway.”

Cynthia explains that Jamie was happily taking expressed breast milk from bottles until four weeks ago. He'd been fussy with feeds from the very beginning, she says, like his big sister - who'd been quickly weaned and fed formula. When Jamie developed so much gut pain at about two weeks after the birth, she'd decided to use expressed breast milk and everything was fine from then on. Jamie had been gaining 200 or 300 gm a week, and thriving.

"You're amazing!" I said, truly astonished by what women manage to do against all the odds.

“And then at nine weeks he suddenly began to get pain with the bottle,” Cynthia says. “We tried different bottles and different flows but he would still suck in air and back arch. We thought it was gas, so we used colic drops which helped at first. Then the GP diagnosed reflux and we started Losec. His intake dropped over a period of two or three days from a litre of expressed breast milk a day to 500 mls in total. We could only feed him when he was waking up out of sleep because it hurt him too much otherwise.”

This story, like so many I hear, makes me sad, because in my view Jamie's feeding trajectory would have been entirely different with a timely gestalt intervention. Here's how I make sense of the story Cynthia tells me.

• Firstly, Jamie has positional instability at the breast from birth, interpreted as gut pain, so Cynthia starts the heroic task of pumping and feeding her baby exclusively expressed breast milk by bottle. She feels his milk intake is better regulated that way, because it controls the fussy behaviour that she's been told is because of his pain.

• Then he develops a conditioned dialing up at the bottle (also not due to pain or to reflux though his health professionals interpret it that way). His distressed behaviour with the bottle rapidly worsens as his concerned parents try different bottles and teats and use some pressure with feeds to get the expressed breastmilk in, very frightened about his weight. This is another moment when a Possums or NDC intervention for conditioned dialing up with the bottle could have altered trajectories altogether.

In desperation, Cynthia and her partner have moved into a cycle of accidental parental coercion with feeds, resulting in a trajectory of worsened dialling up with the bottle. This is confirmed to be the case when Cynthia explains to me that they went up to the local children's hospital about two weeks ago.

“We were force feeding by the time we went up, and terribly worried,” she says. “And the doctors said to continue with what we were doing and to only come in again if his hydration or weight gain fell off.”

These responsible, frightened parents then took their baby to the local paediatrician. The paediatrician diagnosed severe reflux and allergy to the cow's milk protein in Cynthia's breast milk, doubled the baby's dose of omeprazole to five milligrams twice daily, and commenced Cynthia on a dairy elimination diet.

If Jamie had been assessed by another health professional, his problem with feeding could have been diagnosed as neuromuscular sucking weaknesses (in the absence of diagnosable neurological problems) and fascial restrictions or tongue tie, requiring lengthy courses of suck training and bodywork therapy.

By 11 weeks Jamie was so upset with what the parents still thought was pain every time they offered the bottle that they were admitted to hospital. A tube was put down. He was taken off breastmilk and put onto an extensively hydrolysed formula. He is now offered 160 mls of the formula every four hours in a bottle, and whatever he doesn't drink goes into the tube. He is waiting on appointments with the dietician and speech therapist. The paediatric gastroenterologist also suggested that the problem related to Jamie's father's history of reflux, as well as Jamie's dairy allergy. Cynthia also has asthma and cat hair allergy, which the doctor thought made Jamie even more susceptible.

About iatrogenic disruption of parent-infant feeding relationships, nasogastric tube feeding, and long-term feeding distress

Tube feeding is a serious intervention. It can be very difficult to wean a child off the tube, unless you create an appetite drive by not feeding the child through the tube as much. This is scary, not only for parents but for health professionals. Over the years I've watched children stay for very long periods of time on the tube because their doctors were anxious not to let a little one falter even mildly from their weight trajectory. The child has no appetite drive to help develop positive associations with the bottle or food again. The parents struggle because they've been given rigid ideas about structured timing of feeds and volumes which should be consumed, adding further pressure to the complex and highly disrupted relationships between parents, child, and food. Thankfully much of this is changing now as approaches to weaning off the nastogastric tube have evolved.

In short, as painful as it is to say, I have watched over my life-time as my own profession has accidentally created severe feeding disorders in families, due to failure to detect the underlying and initial breastfeeding problems and conditioned dialling up, filling the gap with medical diagnoses which don't help, and creating in parents a great deal of anxiety about their infant's feeding, which can accidentally worsen the pressure the infant feels about feeds, worsening the conditioned dialling up.

What would likely have helped Jamie avoid the nasogastric tube

In this case, as Jamie began to dial up with the bottle, the following strategies were urgently required:

• Review of the techniques of paced bottle-feeding

• Frequent flexible feeds, without regard to volume. This would require accepting milk discards, if milk was offered and Jamie dialled up or wasn't interested

• Growing enjoyable dialed down experiences with the bottle

• Very rich and changing sensory motor nourishment (outside the home). This is an essential part of recovering from a conditioned dialling up, because the more a parent leans on the second tool (when the first tool of milk doesn't seem to be working), the more it helps the baby dial down overall - which helps with feeds.

It often feels to parents as if not forcing in the milk is a terrible risk. What if their baby stops eating altogether? But we need to trust the baby's biologically driven appetite will lead us through once we can dial down the baby'sympathetic nervous system (SNS). It's hyperarousal of the SNS which overrides normal biological drives like sleep and appetite. The accidental use of coercion is a quick route from the bottle to a nasogastric tube, due to worsening conditioned dialing up.

As a health professional, it's my role to be the safety net. Often I say to parents in this kind of situation: "You don't need to worry about your babies weight, I will take on that worry". I make sure parents know how to detect dehydration, for which they need to seek urgent help. Then they can come in for a weigh at a time I judge to be safe, sometimes in 2-4 days, sometimes in a week, sometimes in three weeks, to review the weight.

“Your job,” I say to parents, “is to focus on rich sensory motor nourishment outside the house, to make frequent, flexible offers with no pressure, to grow the moments when the feeds are working, and to stop the feeds when they are not working.”

And usually the conditioned dialing up rapidly disappears, to parents' astonishment and delight.

Going forward with great self-compassion

But here I am with Cynthia and baby Jamie, a fine plastic tube running from his nose across the side of his face, where it is taped in place, the feeding port hanging discretely out of the reach of his exploring hands. What can I say?

We talk about the appointments she has coming up with the speech pathologist and the dietician, and I offer her some resources, in preparation for the future. Her mind is already telling her that this is all her fault, she's failing as a mother. It won't help her for me to tell her about what I think has happened, and I don't.

We talk over strategies for managing the very unhelpful stories that her brain wants to tell her. We talk about strategies for practicing self-compassion. I sensitively query how she is coping and she tells me clearly that she is fine, if upset, and that at this stage she doesn't want psychological support for herself. I explain that her care is now in the hands of her baby's gastroenterologist and that no parent could have cared more or tried harder.

“And if you do ever decide to have a third, you'd be very welcome to come and see me in your pregnancy and we could plan together how we'd do feeds the next time round!” I suggest warmly, on the way out.