Has anyone had tongue reduction surgery at GOSH?

[Mumtotwo]

Hi,

My son is now almost 17 months old. After a lot of fighting I managed to get him to Great Ormond Street Hospital to see the specialist macroglossia in BWS clinic. They have all agreed that his tongue is moderate in size but is causing him problems in eating, with his teeth and cosmetically. They've put him on the waiting list at the start of may, so we are just waiting to hear a date now.

I was wondering if any of you have already been through this. Do you have any advice? Is there anything I should be doing/asking? Is there anything you wish you'd known before you went through the surgery?

Thanks

[Songbird63 Administrator BWS Support]

My son had surgery there at 20 months in 2002. I have put his story about it on the website and there is also some tips about what to take on that page too bws-support.org.uk. There is also a page about TRS form GOSH.

It all went pretty well and these days they have an excellent clinical nurse specialist there to help families through, plus they can use ng feeding tubes post op for a while which can help if needed. They are a great team and you are in safe hands. Many of our members have been through the service. Let me know if you have any specific questions the website doesn't answer and I'll try and help.

[spottydog102]

My little girl had TRS when she was 23 months. We were under GOSH from birth as she transferred there from UCLH 4 hours after she was born. She stayed there for just under 3 weeks until she was allowed home. We asked the Paediatric Surgeon to refer us to the Speech & Language Therapy department as she used to stick her tongue out quite a lot. We saw the BWS team who initially didn't think she needed surgery at first but they continued to reassess her. It became clear that she had tongue tie and we discussed with Mr Dunaway whether it was worth snipping her tongue tie as this may be masking the size of her tongue. She was booked in at GOSH but unfortunately after waiting a few months we decided to go privately as we wanted it done sooner rather than later, especially as she was coming up to her second birthday and starting to talk more and more. At the time, it was very traumatic to see your child go through this but we have absolutely no regrets at all and it hasn't impaired her speech in any way. She stayed in hospital for 2 nights and lived on tube yoghurts for nearly a week until she was able to eat and the stitches dissolved. Luckily she was young enough not to remember anything. She is now 5 and started school last September. She is a very happy beautiful little girl.

[Saiamma in reply to spottydog102]

Hi

May I know how much you spent for Tongue reduction surgery ?

Is her speech and appearance ok now ?

My daughter is now 1 and half month old and has BWS diagnosis and macroglossia.

I am planning to ask for GOSH referral at 6 months.

Anxious about how things will be in future ?

[BobBaker Administrator BWS Support]

Our son had the tongue reduction surgery back in 1984 when things were very different. Have you had a look at the GOSH factsheet about preparation for the operation? It can be found at gosh.nhs.uk/conditions-and-...

There is also a factsheet about the clinical outcomes which can be accessed at gosh.nhs.uk/conditions-and-...

In our son’s case the operation was life changing and the team at GOSH are excellent. The very best of luck for your son.

Bob Baker

BWS Support Group UK