Last week I got a call from a breastfeeding supporter who was reduced to tears with worry in relation to a mother and baby who she was supporting. The baby was having trouble breastfeeding and the breastfeeding supporter was almost certain that the baby had a tongue tie. The mother concerned could not afford to pay privately for a tongue tie division. It is very hard to get a referral from a maternity hospital to private providers and the waiting list for public providers is currently approximately between 3 and 4 months long.
This was not an unusual call, I receive calls of this nature on a regular basis. While some parents can access a tongue tie division easily, others desperately struggle to access services. Some parents can access clinics, having had no prior assessment for breastfeeding issues, and have their babies tongue tie divided without delay. Others go for weeks experiencing every breastfeeding issue imaginable.
I see some mothers and babies from whom breastfeeding has not improved post division. This usually occurs as a result of incomplete division. It could also be that the problem was not a tight frenulum in the first place or that full lactation assessment and history wasn’t completed which would have identified the cause of low supply before intervention occurred.
Tongue Tie and Breastfeeding in Ireland
Currently, in Ireland, there is no standardised national or local H.S.E. operated frenotomy service for breastfeeding babies. No audits of tongue tie divisions are available as most are operated as private services. Yet, there are plenty of private services for parents who have the funds to pay for a frenotomy. Our most dismal breastfeeding rates occur within the lower socioeconomic bracket. We need to support these mothers to be able to breastfeed by providing them with all of the services other, more resourced mothers, have access to.
There is a national policy in place, however, like many areas in the Irish health service, there has been no follow-up to provide a workable service once the policy was devised. The policy addresses for Neonatologists, Paediatricians & HSE staff and it was drafted by a working group (of which I was a part). However, it was then deconstructed, changed and signed off without the working group’s approval.
One positive development in relation to the issue is that the HSE breastfeeding website has a newly updated information page on tongue tie for parents. But still, we have no public service for these babies.
I hear stories of babies being referred from maternity hospitals to public clinics and then being given an appointment for 4 months down the road. Nobody can sustain breastfeeding problems for that long. In other instances, parents are relieved to get a quick appointment but then no division is done. They are informed that the baby’s tongue tie is ‘minor’ or ‘mild’. These mothers are advised to simply pump their milk and give their babies a bottle instead. ‘Breastfeeding is painful’, they are told, it comes with the territory. These specialists suggest that tongue ties are over diagnosed, referring to it as ‘an industry’.
Is Tongue Tie Over Diagnosed?
I am frequently asked whether too many babies are being diagnosed and treated with TT (Tongue Tie) in Ireland today. Midwives, mothers and voluntary counsellors enquire why all the babies in my breastfeeding support group have had a TT release. I, personally, have been very confused by the lack of action on the tongue tie issue in Ireland. Have we got it wrong? Are these specialists right, are too many babies having divisions?
I decided to examine the rates of tongue tie division in Ireland per week compared to the amount of newborn babies initiating breastfeeding also per week.
Tongue Tied Babies – The Percentages
In Ireland, 200 babies are born every day for a weekly total of 1400. The national average breastfeeding initiation rate is 56%. This includes all babies who are introduced to breastfeeding, whether it is sustained or not.
It should be noted that this rate sits at a healthy 75% initiation in some areas and less than 20% in others. Examples of areas that have a high breastfeeding rate are Wicklow and South County Dublin. The initiation rate here is over 70% in some pockets, but it falls to 68.3% by the time of the first Public Health Nurse visit at around 1-2 weeks. There is then a further drop to 44.1% at 3 months of age.
Those located in an area with a high breastfeeding rate will naturally encounter more tongue tie divisions taking place. This may explain why some professionals suggest that it is over diagnosed. It can also account for a high incidence of tongue tie procedures in some breastfeeding support groups. Mothers who have been experiencing problems need support and are more likely to attend breastfeeding groups. They also seek out more experienced groups and ones which they feel will be more receptive to their particular issues.
Thus if we take the national initiation rate of 56% for Ireland, we can estimate that 784 babies start off breastfeeding per week. We know that the reported incidence of tongue tie in babies is 4-11% according to the literature. However, this number accounts for anterior ties only, it does not include numbers for posterior ties.
I approached some of the leading providers in Ireland and obtained approximate numbers of babies attending the clinics on a weekly basis. From this research, it appears that approximately 65 tongue tie divisions are currently being performed across Ireland per week.
This gives us a reasonable percentage of the numbers of babies who are breastfeeding and currently receiving TT release. This number stands at 8.3%, right in the middle of the incidence rate reported in the literature. Considering that posterior rates are not represented in the literature, it is actually likely that under-diagnosis may be occurring. What is clear is that the rate is not off the scale. It is not increasing and tongue tie procedures are not being carried out everywhere.
Even if, for argument’s sake, we were to drop the rate of breastfeeding to 40%, as it is in some areas, the amount of tongue tie divisions would still only be 11.6% of breastfed babies. This does not represent an over-diagnosis in my book.
One study reported that only 50% of babies with a tongue tie will have problems breastfeeding. However, the fact is that clinics only see the babies who present with a problem. A certain percentage of these babies have a posterior tongue tie but we have no incidence rates of posterior tongue tie (PTT) at present. Current thinking is veering towards looking at other reasons or differential diagnosis of PTT.
To address the question of whether there are too many babies being diagnosed and treated with TT. I must say that some days when I see people’s personal accounts online, I think that there are. Unless a baby’s suck and breastfeeding has been assessed by an International Board Certified Lactation Consultant (IBCLC) tongue tie cannot be out ruled as the cause of the problem. While I agree that not every baby who has a tight frenulum requires a division, most will benefit from it and it will make breastfeeding easier. However, there can be other factors at play that exacerbate the problem or which can masquerade as tongue tie.
Ireland Needs a Tongue Tie Action Plan
What I cannot understand is why our neonatologists and paediatricians have dismissed this problem. How can they silence lactation consultants in the hospitals & HSE and not allow them to refer babies? Why won’t they allow a team of midwives or lactation consultants to be trained to perform tongue tie divisions in the maternity wards? That, at least, would be a start.
This problem is far from being resolved. In my view, if every mother/baby pairing who are experiencing problems were provided with a feeding assessment by an IBCLC prior to tongue tie division we would see better results post frenotomy. This, in turn, would promote increased confidence in the existing services. There is a definite need for a national training programme in tongue tie division in Ireland.
So, where does that leave the distressed breastfeeding supporter who I spoke to last week? I am glad to report that she contacted me to say that, in conjunction with the mother, she approached a frenotomy provider who has agreed to perform the procedure at a reduced rate or via a payment plan to ensure that the baby can overcome this problem. The supporter is also maintaining regular contact with the mother to help her through this difficult time.
While this should relieve the current issue for this mother/baby pairing, there are many others up and down the country who remain unable to access the services needed to allow these young babies to avail of one of their most basic needs, to be able to feed.
©Nicola O’Byrne RGN RCN IBCLC October 28th 2016.