Andrea Mara

Official website

Tongue tie fail

Tongue Tie. Have you heard of it?

Most people haven’t.

I hadn’t, when my third baby was born a week before Christmas in 2011.

I felt very blessed to have a healthy baby, and excited that we now had a boy. I felt confident about breastfeeding. So very different to how I felt when my first baby was born – unsure, hesitant. This time I knew what I was doing. Or so I thought.

happy but tired newborn

Breastfeeding was a little sore for the first day or two, as is often the case. But unlike my first two experiences, instead of decreasing over time, the pain intensified. When he was four days old, I was at home, asking a friend if boys just have a stronger suck – would that explain the pain? I knew by her facial expression that my theory didn’t hold water.

Two days before Christmas, my public health nurse phoned and I told her that breastfeeding had now become extremely painful. She asked “Could he have tongue tie?”

I had no idea what she was talking about.
She explained that it’s when the frenulum (the piece of tissue that connects the tongue to the base of the mouth) is shorter or thicker or tighter than normal, and it makes it difficult for the baby to feed efficiently, and in turn this is painful for the mother.

I contacted Holles Street hospital and a very sympathetic member of staff arranged to see me that day. She told me that my baby had a “mild” tongue tie and that I didn’t need to do anything about it.

She mentioned that there was “a man in Clonmel” who carries out tongue tie divisions but that Holles Street don’t believe that this is necessary. She spoke in a hushed but somewhat dismissive tone about the man in Clonmel – I was left with the impression that this was some kind of undesirable procedure that warranted no further discussion.

The pain continued. It was excruciating.
Every time I prepared to latch the baby on, I asked my husband to take my two daughters out of the room, so that they wouldn’t see the fear on my face, anticipating the pain.

Soon I could feed on one side only. I got mastitis on St. Stephen’s day. I fed through it (as you should), on the “good” side, pumping on the other side. I cried. A lot.

I was miserable. Miserable with pain, and sad that these newborn days that should have been so happy were being sabotaged by this condition I’d never heard of – tongue tie.

I went back to Holles Street, desperate for help. I saw a different member of staff. She gave me a name – Nicola O’Byrne. A private lactation consultant who could help me.
I called Nicola that day and we arranged for her to come to my house.

She said she saw signs that were typical of a grade 4 tongue tie – not the “mild” case that Holles Street had suggested. She sat on my couch and talked to me and listened to me and gave me information and reassurance and hope.

She explained that tongue tie is not normally diagnosed in Irish maternity hospitals, and it’s not treated in Irish maternity hospitals.
She explained that there are only a handful of medical professionals in Ireland who carry out tongue tie divisions.

She told me that two generations ago, midwives dealt with tongue tie in newborn infants once diagnosed, soon after birth.
She explained that because formula feeding had replaced breastfeeding for so many mothers over the last two generations, knowledge about tongue tie had been lost.
You can see some of Nicola’s recent comments in this week’s Irish Times article here.

She referred me to “the man in Clonmel” – not, as it turned out, a renegade, under-the-radar practitioner, but Justin Roche, a consultant in Clonmel General hospital who carries out tongue tie divisions there on a daily basis.

So on a rainy, cold Wednesday in January, my husband and I drove our five week old baby to Tipperary and had his frenulum snipped. He cried for a few seconds, then latched on and fed happily. It took just two weeks for his ability to feed to be fully transformed – no more pain for me, no energy sapping inefficient feeding for my little boy.

All good so.

But not really.

I’m still angry that I had to go through this unforgettable pain for five weeks.

I’m still angry that the newborn days were full of frustration and tears.

I’m still angry that I was informed by Holles Street that it was a mild case and didn’t require any intervention.

I’m still angry that paediatricians in Holles Street don’t believe that tongue tie affects breastfeeding.

I’m still angry that I had to drive on a rainy Wednesday from Dublin to Clonmel to have the tongue tie snipped – a simple procedure that could be carried out in maternity hospitals before going home.

And mostly, I’m angry because there are hundreds of mothers all over Ireland who have had a shortened breastfeeding relationship due to undiagnosed tongue tie.

How many mothers every day, every week decide they can’t continue breastfeeding their newborns because it’s too painful?
Because the baby doesn’t seem to be getting enough milk?
Because the baby is crying and seems hungry?

Between 4% and 10% of babies are born with tongue tie.
And maternity hospitals are not diagnosing it, not treating it, not informing mothers.

How many breastfeeding journeys are cut short by tongue tie?
I don’t know.
Actually, nobody knows, as there are no real statistics, no records.
And a very limited official recognition of the condition.

As Nicola O’Byrne said to me recently –
“It’s pretty unbelievable
that there is no service in our capital city
for breastfeeding babies who are
having difficulties because of tongue tie”

There are small, small changes, coming slowly; changing attitudes of some healthcare professionals as they become more informed, and increased awareness through online forums, and word of mouth.

A friend who says her baby is crying a lot and that breastfeeding hurts – a suggestion from me that it might be tongue tie and could be treated.

“What’s tongue tie?” she says “I’ve never heard of that?”

I know. That’s the problem.

***

For help with tongue tie: first see a lactation consultant, and if necessary, she will refer you to a medical practitioner who performs frenectomies (tongue tie release):

Dr Justin Roche, Tipperary General Hospital, phone: 052 617 7033

Professor John Fenton, Barrington’s Hospital, Co Limerick, phone: 061 307540

Additional note: since this post was first written, two new tongue tie division services have become available in Dublin:

Dr Siun Murphy, Consultant Plastic Surgeon, Blackrock Clinic is now dividing tongue ties in babies up to 1 year (breastfed and formula fed babies). Referrals accepted from IBCLCs, GPs, PHNs, Paediatricans. Referrals should be sent to siun@drsiunmurphy.com. Enquiries 087-6249959.

Also, Dr. Alan O’Reilly, General Practitioner, The Meath Primary Care Centre in Dublin city centre is  providing a frenotomy- tongue-tie division service to Private and GMS patients. The service is provided for babies with breastfeeding problems up to 6 months old. Referrals are accepted from lactation consultants, public health nurses and GPs. For more information please contact the clinic at 01-4536636. Referrals can be emailed directly to dralanoreilly@gmail.com. Further information will be available shortly on their website

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