10-week-old Nika is gaining weight too slowly and Marija's doctor insists she stop breastfeeding altogether, diagnosing allergy

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. All names are fictional.

Breastfed baby Nika was re-hospitalised 16 days after birth because she hadn't regained her birth weight

Marija told me the story through a secure telehealth platform from a couch in her lounge-room, blank white wall behind her, sundry items – a bunny rug, someone's discarded shirt, a book - resting beside her on the beige couch. She was leaning forward, face resting wearily on her hands, elbows propped on her knees.

Marija recounted in a controlled voice how her ten-week-old baby, Nika, had been re-admitted to the local hospital in a regional town twice for failure to thrive.

The first time, Nika was just 16 days old when the child health nurse discovered that this newborn was still well below her birth weight. Nika and her husband Ivan hadn't realized this, because Nika was a happy if sleepy baby, mildly jaundiced, who'd spend long periods of time quietly suckling at the breast.

You can find out about weight gain and the breastfed newborn here.

Marija had nipple pain at the beginning but by the time she and Nika were hospitalized for the first time, that had disappeared and she'd been thinking things were going well. It was a terrible shock, and Marija felt guilty and ashamed for not having realised.

In hospital, with the help of various breastfeeding support professionals and the paediatrician, Marija began pumping and giving Nika bottles of formula in addition to expressed breast milk. They were discharged a few days later, once the birth weight had been reached, and Marija continued to pump her breasts every three hours day and night.

You can find out about triple feeding here.

She saw a few International Board Certified Lactation Consultants over this period of time, two of whom were concerned that Nika had oral connective tissue restrictions. They recommended frenotomy for a posterior tongue-tie and upper lip-tie, and orofacial myofunctional therapy, all of which Marija and Ivan proceeded with, bewildered but anxious to do whatever they could to help Nika.

• You can find out about tongue-tie here.

• You can find out about traditional bodywork therapy here.

Ivan was out of the home for paid work during the weekdays, but he enjoyed giving Nika her bottles after Marija breastfed during the evening and night. They had to do a lot of burping and the baby often seemed to dial up with the bottle.

• You can find out about burping here.

At five weeks Marija is advised to stop triple feeding (or four-stage feeding!) and exclusively breastfeeds Nika for two weeks - after which Nika is hospitalised once again because of poor weight gain

In the meantime, Marija was quadruple feeding: offering both breasts, then pumping, then offering a bottle of expressed breast milk if she had some, then topping up with formula. It took 90 minutes to feed Nika. The baby would sleep for 90 minutes, and then it would start all over again. For many weeks Marija rarely left the house, other than to visit the bodywork therapist for the baby. Life was miserable.

By the time Marija saw a speech pathologist, she was beyond exhausted. The speech pathologist said that there weren't any residual oromotor or tongue function problems remaining, and suggested Marija simply went back to exclusively breastfeeding.

“They were the loveliest two weeks of my life with Nika so far,” Marija says steadily. “It seemed to be working. She was very happy, and everything seemed to easy. We did a lot of cluster feeding.”

“How often did you offer the breast in a 24-hour period?” I ask, gently.

“Maybe eight or ten times.”

“Both breasts each time do you remember?”

“Maybe most times, not always. I could often hear her swallowing.”

“Did you give her any formula or expressed breast milk in that fortnight?”

“No. But the first week she gained only 80 gm. Then the following week I went in again to check her weight and the GP hospitalized us for the second time. In that second week she'd had some mucous in the stools and had only put on 50 gm weight. So that was just 130 gm in total for the whole of that fortnight when I was exclusively breastfeeding. I didn't realise, because her nappies were fine, and everything seemed to be going well.”

On re-admission to hospital when Nika is seven weeks of age, Marija is told to stop breastfeeding

Marija tells me that Nika also had a small spot of blood in a nappy on three days in a row, just prior to seeing the GP.

“Not just mucous, on three occasions there was a fleck of blood in Nika's nappy with the poo, three times over about three days.”

This is why the paediatrician who admitted her and Nika into hospital for the second time diagnosed Nika with food protein induced enteropathy syndrome, and instructed Marija to completely stop breastfeeding, commencing Nika on elemental formula only. Nika then gained 300 gm in three days.

• You can find out about allergy in babies, including food protein induced enteropathy syndrome, here.

• You can find out about blood in baby's stool and what to do here

Two week and a half weeks have passed now between Nika's second admission to hospital and the day of Marija's consultation with me. After stacking on the weight in her first three days of hospitalisation, Nika has gained 250 gm a week – one week spent in hospital, the other at home.

I plot Nika's weight on my own World Health Organisation percentile charts during the consultation. I can see the frightening plateauing of her weight gain prior to the second admission. Nika had already been 1.5 percentile lines below her birth weight. By the time she was admitted to hospital for the second time, she was almost three percentile lines below her birth weight, a dangerous situation.

The doctors had needed to admit Nika and to screen extensively for what is sometimes called 'failure to thrive'. The tests, fortunately, were all negative. And Marija and Ivan were right to supplement this baby with formula as vigorously as possible, as they'd been advised.

But was it right to diagnose enteropathy on the basis of three flecks of blood in the baby's nappies and failure to gain weight over a two week period of breastfeeding? Unfortunately, I believe this was a case of misdiagnosis.

My private analysis of baby Nika and Marija's situation when they consult me

Here is how I made sense of Nika's serious weight gain problems. I did not communicate aspects of my private perspective on this to Marija, forming the opinion that it wouldn't help her or her family to hear all of my thoughts on their case.

1. There was some element of breast tissue drag when Marija breastfed Nika in the first days after the birth, because Marija had nipple pain. This breast tissue drag most likely was not relevant going forward, since Marija's pain resolved.

2. Nika was described as a sleepy, mildly jaundiced baby. It is not uncommon in the first two or three weeks of life for a little one to become caught in a cycle of sleepiness due to inadequate caloric intake, so that the baby doesn't cue to breastfeed enough, worsening the cycle of sleepiness and poor caloric intake. I didn't focus on some details of this first admission in the consultation I had with Marija, because there was so much else to attend to. It's not clear to me just how far below birth weight Nika was at 16 days, and how frequently Marija was offering each breast. I do know that with supplementation Nika was back at her birth weight before three weeks of age. Would it have worked to simply wake this baby and offer the breast much more frequently, switch feeding, ensuring positional stability, ensuring daily monitoring, rather than starting formula? It's quite likely the formula was necessary, but I am unable to draw further conclusions without more detail.

3. Marija and Ivan went ahead with frenotomies, both under the tongue and under the upper lip, and proceeded with traditional bodywork therapy. You can find out about frenotomy here and traditional bodywork therapy here. Given that multiple health professionals had examined Nika's mouth prior to the lactation consultants who recommended frenotomy and bodywork, and given that the latter diagnosed posterior tongue-tie, it seems clear Nika didn't have a classic tongue-tie. Therefore, in my mind neither frenotomy nor bodywork therapy are relevant to this baby's weight gain crisis. This is confirmed by Marija's ongoing need to quadruple feed with expressed breast milk and formula post-frenotomy and during the course of traditional bodywork therapy.

4. The attempt to transition back to exclusive breastfeeding occurred much too quickly, since triple or quadruple feeding typically often undermine breast milk production. Marija needed to gradually build her milk supply at the same time as she gradually offered Nika less formula, with careful monitoring of the baby's weight. Sudden withdrawal of formula risked exactly the outcome this family went on to experience: a crisis of inadequate weight gain.

5. Marija was offering Nika only perhaps six to eight times each breast in a 24-hour period during that fortnight of exclusive breastfeeding. In my clinical experience, most women need to breastfeed 12 times each breast (flexibly, without counting) in a 24-hour period to maintain their supply and their baby's weight gain. You can find out about frequent flexible breastfeeds here.

6. The flecks of blood in Nika's stool were unrelated to this baby's weight gain crisis.

   • Nika has benign non-allergic infant proctocolitis, which requires observation only at this stage. You can find out about this here.

   • It's common for health professionals to misdiagnose benign non-allergic proctocolitis as a food protein induced allergic proctocolitis. The current European protocols, which we use in the Possums programs, are more aligned with the existing research on this topic.

   • It is still common for the medical condition of food protein induced enteropathy syndrome, a severe and even life-threatening form of allergy, to be confused with other unrelated breastfeeding problems, and overdiagnosed. You can find about allergy and the breastfed baby here.

Marija asks me if I think she can return to offering Nika the breast

Marija's tone became less controlled as our consultation progressed. I saw that in her case, what some doctors might have described as a 'flat affect' when we began to talk was a woman desperately trying not be labelled as anxious. She didn't know if I'd judge her for caring so much about breastfeeding.

"I want to breastfeed my baby," Marija said quietly in a while. "Can you help me? Is it possible? Obviously I want to do the right thing by Nika, and keep her safe. But there's not been any blood since those three flecks when I was breastfeeding. What do you think?"

I gave her my opinion, carefully. There was no evidence-based rationale for weaning this baby off the breast, though there had definitely been an urgent need to supplement with formula, given the situation of a breastmilk supply which was not meeting Nika's caloric needs.

Marija told me that she was now pumping every three or four hours during the day, twice in the night, and storing exactly the same volume of milk that Nika was taking of elemental formula in the freezer. Marija had also been on a dairy and soy elimination diet herself for the past fortnight, and was separately labelling and dating the dairy and soy elimination breast milk.

“You're amazing!” I said, sincerely, and she allowed herself a faint smile. “That's so much work!” I insisted. "Really, you're amazing!!"

This was a difficult situation for me because Marija's paediatrician was managing Nika according to what I considered to be outdated guidelines, and was not up-to-date with the research. I knew that eliminating allergens from Nika's diet unnecessarily was likely to create risk for Nika (not to mention to the undermining of breastfeeding) of true allergy down the track, without benefit for baby or family.

I set the conditions by which I felt able to help with Marija's return to breastfeeding

I set my ground rules.

“Marija, Nika definitely needs to have weekly follow-up by your local GP, for a start. Any work we do together can only occur if that is happening. Are you comfortable to commit to that?" She agreed. She had a good relationship with her GP. We agreed that I would communicate with her GP.

"Ok. Here's the plan that makes sense to me. Firstly, I can't support any changes until I've spoken with your paediatrician. That will be my first step. Then, once the paediatrician is on board, I suggest you return to breastfeeding. We'll still need to supplement Nika generously with the formula. I don't believe we should change formulas now, but should stick with the amino acid based formula you're already using. I propose that we keep you on the maternal elimination diet, and only use the expressed breast milk which you pumped after you began the elimination diet.”

I believed that neither of those two steps (staying on the amino acid based formula, or staying on a maternal elimination diet) were necessary for Nika's health and well-being. But they were necessary if I was to secure the best possible outcome for Marija and Nika in the complex situation of health system blind spots. Proceeding as if Nika had an allergy, even though I privately believed from my detailed history-taking that there was nothing to suggest this was the case - was the best way forward, given the critical importance of Nika's local doctors and health professionals in this family's care.

“Watch out for more flecks of blood in Nika's nappies," I said, "and if the bleeding recurs please talk this over with your GP. But three flecks of blood in the nappies of a baby of Nika's age are not diagnostic of either allergy or enteropathy.”

Allergy is overdiagnosed in breastfed babies because health professionals are not trained in identifying and managing breastfeeding problems

With Marija's consent, I phoned the consultant paediatrician at Marija's local public hospital that afternoon.

Dr P. sounded about the age of my daughter. I explained that Marija had made an online appointment with me, hoping to return to breastfeeding. I emphasized that I understood how concerning the situation remained due to Nika's two admissions for failure to thrive. I explained that I had no interest in using anything other than the amino acid formula for supplementation or breastmilk collected two weeks after commencing a dairy and soy elimination diet. But I also explained that I hoped to work with Marija on a return to breastfeeding.

“I suspect we didn't follow her up enough after that first admission,” Dr P. said briskly, and at that moment I understood the guilt and anxiety this colleague felt because something had gone wrong which could conceivably be framed as her fault.

Then the paediatrician explained that Nika's weight loss was due to enteropathy caused by cow's milk protein intolerance and possibly other kinds of protein intolerances as well, hence the elemental formula.

“Could I ask what signs lead you to that diagnosis?” I queried, using a light and friendly manner.

“Mucous and blood in the stools,” she replied categorically.

“But we don't need to worry about mucous in an infant's stool, wouldn't you agree?" I replied. "And Marija told me it was only three flecks of blood over three days? Is that what she told you?” I was trying to bring her on side.

“That baby has enteropathy because the baby failed to thrive on usual amounts of milk,” the paediatrician said angrily, starting to talk over me.

“But we don't know that,” I responded carefully, “because Marija was exclusively breastfeeding in those two weeks without top-ups. She was only offering each breast something like six or seven times in a 24-hour period. Nika simply didn't get enough calories from the breast. Marija's supply hadn't had a chance to recover before she jumped back into exclusively breastfeeding Nika, don't you think?”

“We measured what the baby was receiving in that fortnight and she was not gaining weight on normal amounts of milk," the paediatrician insisted, icily. I was tempted to ask how this calculation was made - Marija hadn't mentioned test weighing at all - and anyway, 600 mls in a 24-hour period is normal for one woman and her thriving exclusively breastfed baby, and 1300 mls in a 24-hour period is normal for another woman and her thriving exclusively breastfed baby. I could see that the paediatrician was out of her depth, and very defensive. I said nothing. Then it became clear to me why Marija knew it was very important not to project emotion.

Dr P. said: “I'm not surprised that Marija made contact with you. This is part of her obsession to breastfeed, which is not in her baby's best interest. Marija's selfish obsession is threatening her infant's physical safety.”

I listened.

Dr P. continued, ominously: “I repeat, this woman is not acting in her baby's best interests. Her husband Ivan was much more reasonable about Nika's safety. He could see the situation. He was more interested in keeping the baby safe than Marija. Marija has an unhealthy obsession with breastfeeding. She has contacted you as part of that. In suggesting the baby doesn't have an enterocolitis, you are not acting in the baby's best interests.”

“Right,” I said. It dawned upon me that Dr P. might be making a veiled threat to report both myself and Marija to the authorities for threatening the baby's safetey. I could now see the danger to Marija psychologically. She was being framed as having a mental health problem, perhaps an obsessive compulsive disorder (the obsessive compulsion to breastfeed). I could also see that her husband's perspectives were being used against her, as Dr P. set up psychological “splitting” between Ivan and Marija.

“I research and educate in this field,” I ventured, wondering if that might help. “In the history I've taken, Nika didn't display signs of enteropathy or colitis but of inadequate caloric intake, and her GP has currently declared her healthy. ”

Dr P. cut in over me. “I don't care if you research,” she said rudely. “I'm following the guidelines.” "Could you tell me which guidelines?" I asked politely. But Dr P. ignored me and became authoritarian, pulling rank in the invisible hierarchy which exists in the minds of some non-GP medical specialists. I was taken aback.

“Where are you? Did you examine the baby?” I explain that I was consulted from a distance, by telehealth, and this seems to infuriate Dr P. further, as if it was irresponsible to consult by telehealth. I do understand the limitations of telehealth, and how to work safely within those limitations. I also understand Dr P.'s fear about the baby's weight gain, and the terrible burden of worrying in the night if you've done something wrong as a doctor, worrying that a baby might die because of you. I know what it is to be stricken by a horror of failure, horror of a mistake. I understand the weight of life-and-death responsibility.

Enunciating every word clearly, Dr P. declared: “I am telling you that this baby is not to breastfeed until I am happy that she is gaining weight well. Her next appointment with me is in two weeks time.”

I politely explained I would take no further step in Marija's care until a paediatrician gave me the go ahead.

“I”ll see her in two weeks time,” Dr P. announced, and then hung up on me.

I phoned Marija and said, ”I can't proceed with helping you until a paediatrician has cleared your baby to see me.”

“I want a second opinion,” Marija announced, courageously.

Soon I was on the phone to a senior paediatrician who knew my work, and within days the family had driven nearly three hours one way to see him. He formally cleared the baby to breastfeed. This was not, he wrote in his report, the presentation of an enterocolitis.

Needless to say, he proposed to keep Nika on a maternal elimination diet, and the baby on the amino acid formula, with close monitoring of her weight by the family's GP - but Marijo could begin to breastfeed again. I don't know if this paediatrician also privately understood that the amino acid formula and maternal elimination diet weren't helpful, but in balance Nika needed only this one crucial victory: the right to drink milk from her mother's body, which in this case should never have been put in opposition to her right to be well nourished and physically safe.

Marjia breastfeeds her baby and begins a closely monitored and gradual transition away from formula use

And so Marija and I worked together, still by telehealth. Their fit and hold wasn't terrific. The baby was doing a lot of drowsing and enjoyable resting at the breast, but we needed to give the baby good parts of the day without the bottle, so that her appetite drive could switch on. We needed frequent flexible feeds, at least twelve offers each breast in a twenty-four hour period, not waiting for the baby to cue but offering whenever Marija thought it might be a good time. We needed no pressure on any feed, never coercion, just offering. We worked on getting that fit and hold right.

This time, we knew from all the expressed breast milk that she'd so carefully labelled and stored in the freezer, that Marija really was producing as much milk as her baby needed. After working together, I was happy that Nika knew exactly how to be an effective pump. But still we made a calibrated transition, monitoring weight carefully, initially not leaving it more than four days to weigh Nika.

We needed to meet the baby's sensory motor needs by getting Marija out of the house a lot more, thinking sensory motor adventure rather than turning immediately to the bottle if Nika began to dial up after a feed. Marija only offered the breast during the the morning, and perhaps even only the breast until mid-afternoon. She and Ivan also continued supplementing with formula at least a few times a day, using paced bottle-feeding.

“I won't give you a plan,” I explained, “because you will be watching your baby and working out what is manageable for you in any particular day. My aim is to make sure that Nika is positionally stable when breastfeeding, so that over 24 hours she will take what is required, without pressure on any particular feed. We know you've got the supply. We can let her appetite build in the first half of the day, with a focus on frequent flexible breastfeeds and meeting her sensory needs, as we do a calibrated transition away from formula. Given the traumatic experiences you've already had as a family concerning Nika's weight, we'll just do this steadily.”

And that's what they did.

Disclaimer: the case above like all stories in Possums Breastfeeding & Lactation is an amalgam of multiple cases that have presented to me, and is not derived from any specific or identifiable mother-baby pair or family who have seen me as patients. All names are fictional.