Voices: Parents of tongue-tie babies

Baby with bottle Some parents have spoken of problems with breastfeeding

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A parenting charity, NCT, is calling for the expansion of help to parents of babies born with tongue tie, which may cause difficulties with breastfeeding.

Mothers and fathers of babies with the problem have told the BBC of their experiences having the problem diagnosed and treated.

While many have opted for procedures using private healthcare, most would like to see the NHS increase its support.

Sharon Philbey, London

Sharon Philbey Sharon Philbey believes NHS resources are too stretched to meet demand

As my baby was premature, I was conscious of feeding him more in order to catch up. However, I nearly gave up breastfeeding several times as he was feeding nearly all the time and not seeming satisfied very often.

I went to an NCT breastfeeding specialist a week after coming home to help with latching. I couldn't get him to do it properly. He just wouldn't open his mouth wide enough and was chewing me.

After nearly four months, I paid £100 for a private specialist to help and she immediately spotted a double posterior tongue tie. I then paid privately to get it snipped, and breastfeeding was instantly a complete joy. Thankfully, I really enjoyed the last two months of feeding.

It seems to me that unless your baby goes off his food or drops weight, there isn't enough NHS postnatal support or awareness to identify and support problems like this, and you often need to pay privately to get a solution. The support that is there is good. It just seems far too stretched to meet demand.

Sarah Cart, Nuneaton

Sarah Cart Sarah Cart will pay £1,000 for private treatment

Our daughter was born with a tongue tie and she wasn't able to breastfeed because of it. We were not told about the tongue tie by midwives - it was something we found out a few days after her birth.

She is now 10-and-a-half months old and we have seen a consultant privately and she has an operation scheduled for April. The operation is set to cost £1,000, which is ridiculous for a 10-second procedure, but we feel we have no choice. And she will have to undergo a general anaesthetic.

There should definitely be more provision on the NHS so parents do not have to spend this large amount of money for a simple procedure.

Glen Rogers, London

Glen Rogers and family "My wife and son are still going strong at 12 weeks," says Glen Rogers

My wife and I were told by two midwives and a GP that our son wasn't tongue-tied.

After persevering through real difficulty with breastfeeding and exhausting every NHS/local authority option available to us, we decided to privately consult a lactation consultant, who diagnosed tongue tie and performed the frenulotomy there and then.

The improvement in his tongue mobility was immediately apparent, although feeding is only improving slowly as he has to unlearn bad habits picked up during his undiagnosed period.

If it wasn't for the diligence of the NCT and the private lactation consultant, we'd have given up breastfeeding by now, although I'm pleased to report my wife and son are still going strong at 12 weeks.

Emily Taylor, Coventry

Emily Taylor Emily Taylor's son had a posterior, rather than anterior, tongue tie

My son and I had real trouble getting breastfeeding established in hospital.

Thankfully I have an incredible pair of local NCT breastfeeding counsellors, who sat with me and my son and watched us, who discussed everything that had happened over the first week of his life, and helped us understand what things might be happening. We were referred to a lactation consultant, who discussed all the issues and observed us feeding and then immediately divided my son's posterior tie.

Feeding immediately improved and we are still feeding 10 months down the line, with no signs of stopping.

Because my son did not have the "classic" signs of an anterior tie, the people in the hospital dismissed the idea. No one on the NHS side had the time or expertise that the NCT counsellors did to help us through this.

I'm still going to the group they run, and looking to potentially do my own training to help other mothers who need this kind of support.

Written by Richard Irvine-Brown

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