Intro

All content of this blog is my own opinion only. It does not represent the views of any organisation or association I may work for, or be associated with. Nothing within this blog should be considered as medical advice and you should always consult your Doctor.

Dear Paediatric Consultant

I wanted to drop you a line to discuss some of the babies I've worked with over the last few years. Although our roles are very different, I  believe ultimately we both want the same thing; happy, healthy, thriving infants.

I know how hard you work.  I saw first hand the dedication as you worked all night on the tiniest of premature babies in the NICU.  The calls you make can be critical to the lives of the most vulnerable members of society, and that must be a huge responsibility as parents hand over a piece of their heart to you. 

It's because of these parents I feel I have to write this letter.  Parents who have babies classed as "reluctant feeders" or labelled as "failure to thrive".  As an aside, it would be great if you could send an internal memo, advising staff this is now referred to as "faltering growth" - a lot of slow-gaining babies are developing normally and are happy and "thriving" apart from their smaller than typical weight gain.

I've seen the same thing play out so many times, that I've realised it's not an odd blip - but a significant flaw in the system, so I think it's time to speak up.

I don't work for the NHS, I'm independent - which means a large percentage of parents I see are pretty much at the end of their tether.   They've gone through the system, or are in it when we meet, and here is what I've found:

A large percentage of babies who don't gain weight, aren't drinking enough milk.

I know, it sounds so basic doesn't it?  We don't need med school to tell us that insufficient intake results in insufficient weight gain, surely if a baby isn't gaining weight, this is the first thing to assess?

It's not happening.

Instead babies are subjected to a battery of tests, readmission to hospital, costs to the NHS, distressed parents, increased workload for you - all because nobody is skilled enough to assess a feed properly.

Perhaps this has become an increasing problem as budget cuts have resulted in fewer infant feeding advisors in our hospitals?  Whilst we have armies of keen and valuable (yet ultimately minimally trained) supporters, perhaps it's inevitable. In a local hospital for a large city, we have gone from three qualified full-time advisors, to one part-time; so perhaps previously babies referred to you had been thoroughly assessed, but this isn't the case now.

When an infant drops two centiles, this (as you will know) usually triggers referral to you.

Before this significant drop, if mum is breastfeeding she may be advised to supplement extra milk.  Yet typically nobody has assessed how effective (or not) the transfer of milk is.  Thus nobody has established whether the top ups or "one bottle per day" are enough.  If a baby is transferring very little at the breast, they may be surviving solely on top ups; why would we expect weight gain?

If a midwife or health visitor has watched the baby feed and believes it to be good, the suggestion might be made to feed more frequently - but if two centiles are crossed, again they are referred.

Of course the converse is also true.  If someone can establish that actually baby is consuming sufficient milk and yet gain is slow, these babies can be referred more quickly.

Once they arrive with you, it seems the assumption a baby can feed well is taken as a given - so the investigation into other causes of slow growth start.

I know this isn't your fault because your long training doesn't cover assessing infant feeding, and even less about the technicalities of breastfeeding.  That you often have to rely on personal experience or take time from your hectic schedule to seek out additional training. I know in the medical environment of a hospital and in complex cases, something so obvious as the inability to drink enough, might be a wood for the trees situation.  Instead heart conditions are ruled out, urinary tract infections, reflux and so on - and when these tests come back negative, it must be difficult knowing where to go.

If we establish a baby simply can't feed well, the next question we have to ask is why?  But instead what often seems to happen is that this is overlooked for "symptom solving", ie purely finding a way for the baby to gain weight.

If why is considered and weight is slow but not worryingly so, a hypoallergenic formula seems on the menu - because it must be dairy intolerance.

One of your colleagues refused to continue treating a mum because she refused to give up breastfeeding, he said she was selfish that she wouldn't give her baby a lactose free milk.   You will be pleased to know after the baby's oral disorganisation was addressed, he gained weight rapidly at the breast.  He wasn't dairy intolerant. 

If the situation is more serious, dropping an NG tube to provide nutrition seems an obvious choice, even in an older baby with no history of medical problems.  Indeed I've seen three infants older than twelve weeks in the last two months, who were sporting NG tubes due to bottle refusal or barely taking any milk orally.

I know too that ankyloglossia doesn't feature heavily on your curriculum, whilst clefts of the lip or palate and conditions like laryngomalacia might get a look in, beyond a tongue tethered at the tip - it seems largely ignored.  Even then the quality of advice received seems to vary massively, please don't misunderstand - some paediatricians do know the ins and outs and spot a tongue tie within minutes.  But we have to acknowledge that a far greater number do not.

Perhaps this is why so many of your colleagues believe, and tell parents, that tongue tie doesn't impact on breastfeeding, and definitely not when bottle feeding?

A mum I saw this last weekend was told by her consultant that "There is no evidence tongue ties cause feeding problems".  

Let's just think about that statement for a moment.

There is no evidence that having your tongue anchored to the floor of your mouth, impacts on feeding - an
act that requires the tongue to cup, elevate and undulate.  Let's take a glance at the image on the right and consider how exactly that will happen?

There is no evidence that having a leg that wont bend properly will hinder the child's chances of becoming a gold medal runner at the Olympics either. Or that water is wet... 

I wonder if I could please ask, what evidence is there that all these problems are caused by food intolerances?  Or that hypoallergenic formula is an appropriate long-term solution?   Or that there aren't risks to cessation of human milk?  What is the evidence for prescribing Gaviscon or Ranitidine as a first-line response to suspected silent reflux?

So we have some of the NHS denying the existence of ankyloglossia and its impact on feeding, we have some that are treating only anterior ties, and others are treating both anterior and posterior ties - and the problem with that, in the age of social media, is parents talk.  They're confused when a midwife tells them their baby has tongue tie and this is the cause of their problems, only to receive a completely conflicting opinion from their paediatrician.  The read online, they discuss things with other parents - and the real risk is they lose faith in you.

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The irony is that there is ample evidence exploring ankylogossia so much so that NICE wrote guidelines.  I know you must be confused as to why 20 years plus of research, still hasn't hit the NHS at a working level, to such a degree that some think it doesn't exist.  I find this baffling too.

I saw a paediatrician last year who was struggling to feed her own baby.  When we found a tongue tie and started discussing the implications - it became obvious that when a baby was readmitted for weight gain issues, still nobody checked oral function and whether baby was organised and effective when feeding. Nobody checked for tongue tie.  Her husband, a doctor in a different field pointed out that this seemed "rather bizarre".

Quite.

It seems common in hospitals to refer babies who are identified with a feeding issue to a speech and language therapist, but guess what?  Tongue tie and breast/bottle feeding doesn't feature in their training either...

The baby this weekend used to feed from a bottle, but then started refusing - so it absolutely couldn't be a tongue tie the mum was told, otherwise how did the baby manage it before?  Taking a brief history revealed yes the baby had taken a bottle, but had leaked, spluttered, gasped and required small, frequent feedings. 

Upon examination there was a 100% tongue tie, that is the tongue was anchored right at the tip preventing the tongue lifting, lateralising or protruding -just like the photo above.  It was one of the most restricted tongues I had seen for months.

Even if nobody is 100% sure if this is the root cause of the problem, it's such a minor intervention compared to a NG tube, reflux medications that are difficult for breastfeeders to use and which may carry other longer- term risks or cessation of breastfeeding; that I have to ask why it isn't it even on the radar?

As you know, infants experience rapid growth in the first 6 months, if a baby has found an adequate compensation strategy when tiny - there is no guarantees this will continue to be feasible as the head grows and the mouth changes.  Babies also have personalities, and a slightly older baby might decide they don't want to do something stressful and that makes them feel like they're drowning, especially once the offer of solid food is on the table.

At least with bottle feeding infants, you can measure their intake - with breastfed babies it's even harder.  It requires someone to watch a whole feed, not just the first few minutes.

Shallow latch hinders transfer
When a baby latches to the breast, it's easy to stimulate the first milk ejection (or letdown).  The baby then really just has to hang on, drink, and try and keep up with the flow - whilst co-ordinating swallowing and breathing.  

After this, if baby is not deeply attached and performing the correct action with his mouth and tongue, he may fail to stimulate further milk ejections. The mouth and tongue may become tired from trying, the flow of milk becomes so slow the baby has a powernap; gradually transfer comes to a halt - yet a full feed hasn't been taken.

We see these same behaviours in bottle fed infants.  Whilst they may not need to latch as effectively as they would to the breast, bottles also require some semblance of an effective suck to deliver milk at an appropriate rate.  Some disorganised infants feed so slowly they have to take small amounts around the clock, others can't slow the flow and appear to gulp hungrily (often labelled "greedy") and occasionally practically drown.

The problem is people are busy, and so often they only observe the first couple of minutes of a feed, see good drinking, assume baby is feeding well and breastfeeding problems aren't the cause of poor weight gain.

Indeed around 75% of the mums I see have notes from someone in their red book stating "breastfeeding going well" - which is interesting when you consider they are seeing me for feeding problems.

This seems exacerbated if there is any other potentially obvious explanation for the problem ie if a baby was premature, it's assumed prematurity is responsible.  If they have a milk intolerant sibling, it must be dairy. Yet surely we all know when it comes to healthcare we can't assume the obvious?

So what would I like to see?

Babies either readmitted or referred to a paediatrician for weight gain issues, should always see a competent infant feeding specialist - either prior to their appointment (potentially massively reducing the number that need to come through to you) or at the very least at the same time.  Really this should be happening long before there is such concern for growth that referral is being discussed.

All pediatricians need to be educated about symptoms of feeding disorganisation, and the many ways to quickly and easily identify if the tongue and suck appears typical.  Pure strength is not indicative of an effective suck, there are no bonus points for sucking like a Dyson, and this in itself can indicate compensatory techniques in play.

Finally, and perhaps most importantly we should be listening to mothers.  I would estimate 95% plus of mums I see know there is a feeding problem, they just can't identify what it is - particularly if all around them are saying "latch looks fine".  Mums often know the baby keeps slipping of the breast, or leaks and can't seem to grasp the teat well - and often suspects baby isn't taking as much as they need.

I know your hours are long, your diary full and that these problems might be considered "fads".  I know at times you might wonder why a mum is even bothered when she could just give a bottle, and might struggle to understand the many emotions feeding evokes, beyond the medical benefits and the basics of nutrition.  

 The distress a mother feels if her baby is not doing the one key thing they need to do and grow is immense, when breastfeeding this can be magnified as mum feels solely responsible.

When some paediatricians are denying that how we eat, impacts on what we weigh - I can't help but feel that as things stand, everyone is being short changed.

AA

If you've enjoyed this article, please consider making a donation.  This money will be used to fund assessment/ frenulotomy (tongue tie release)/feeding support from an Independent Board Certified Lactation Consultant (IBCLC), for those who can't find help within the NHS and are otherwise unable to afford to access independent support.  Any and all amounts (however small) are gratefully received.