From fussiness at the breast at two weeks to a nasogastric tube at 11 weeks, and what might have avoided this

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 though needless to say I don't communicate this feeling in any way. I believe that Jamie's feeding trajectory could have been entirely different with an appropriate and timely gestalt intervention.

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, which controls his pain.

Then he develops a conditioned dialing up at the bottle (which is actually not due to pain, or to reflux, though his parents and 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 coercion to get the milk in, very frightened about his weight. This is another moment when an NDC intervention for conditioned dialing up with the bottle could have altered trajectories altogether.

My private thought that Cynthia and her partner and Jamie most likely moved into a cycle of accidental parental coercion causing worsened dialing up with the bottle is confirmed 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 if his hydration or weight gain fell off.”

They went home and took him to the local paediatrician. The paediatrician diagnosed severe reflux and allergy to cow's milk protein, doubled the dose of omeprazole to five milligrams twice daily, and commenced Cynthia on a dairy elimination diet. However, by 11 weeks Jamie was so upset with what they 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 Alfare. He is now offered 160 mls of Alfare 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 confirmed that the problem related to Jamie's father's reflux and a 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 iatrogenic 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. I watched over the years as children stayed for very long periods of time on the tube because doctors were anxious to let them falter from their weight trajectory. The child has no appetite drive to help develop positive associations with the bottle or food again. The parents struggle along having 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.

In short, as painful as it is to say, I have watched over my life-time as my own profession has created severe feeding disorders in families, due to failure to detect the underlying and initial breastfeeding problems but making medical diagnoses which don't help, at the same time as families are blamed for being anxious and controlling about food!

In this case, when the baby 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 offered and baby began to dial up

• Growing enjoyable dialed down experiences with the bottle

• Not persisting if baby dials up

• Rich and changing sensory nourishment.

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: "You don't need to worry about your babies weight, I will take on that worry." As long as parents know how to detect dehydration, then they can come in for a weigh at a time you consider 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 nourishment outside the house, to make frequent, flexible offers with no pressure, to grow the moments when the feeds are working, and to stop when they are not working.”

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

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. We talk over strategies for managing the very unhelpful stories that her brain wants to tell her. 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, definitely come and see me in your pregnancy!” I suggest warmly, on the way out.