Tongue Tie - The Ongoing Saga

[Mildly]

Well finally had a letter from the hospital today telling us that they are unwilling to put Oscar through a general anaesthetic and so are not going to release his tongue tie at this time. They said they are happy to see us again when he turns one to review the situation.

I am really pissed off. I knew they were going to do this. I cannot believe the hassle we are having to go through. Also they put in the letter

I had the impression at the clinic appointment that he was eating ok but he had some difficulty with the breast

Yes he is having difficulty in that he can't latch on without a nipple shield Gah I just wanted the chance to be able to get him on my boob without having to faff about with bloody shields all the time!

So I am now going to try to get a referral to Chelmsford hospital in the hope that they will perform the procedure, although as they are not my health trust there may be problems in getting funding sorted.


Anyway in more positive news, I had him weighed today and he is now 11lb 2 and has put on 1lb in the last three weeks, so yay

 

[aramintalovegrove]

I dont know anything about tongue tie but it seems poop that you have to get a referral, will the other hospital be willing to do it?

Also that statement almost seems to imply you should chage to bottles or am I reading into it too much?

glad he has put on weight

 

[NickyB]

11lb 2 that's awesome!

You guys are doing great, even if you have to use the shields. I can understand you not wanting them though so keep nagging for the procedure!

 

[clarey]

Grrrrrr how frustrating, hope you can get a referral OK, I get the impression they think you are making a fuss about nothing, probably cos a lot of people would just give up on breastfeeding with this lack of encouragement Stick to your guns hun, youre doing a good job though, great weight gain well done

 

[Meggiewoo]

Hey Mildly

Sorry you are frustrated

As a nurse though hun - I would say that there is a reason why they are unwilling to risk a general anesthetic. There is obviously too bit a chance of something going wrong. They do know what they are talking about. As for making the decision for your child you can not over-rule this risk and say you are willing to take it as you could with yourself. You will probably find that the guidelines for non-essential infant general anesthetics is the same thought all trusts.
I personally would persevere with the nipple shield.

Hugs for you and little Oliver

Kim x x x x

 

[Mildly]

Thanks everyone, I have calmed down now a bit! From an article I've found, the Chelmsford hospital seems more likely to do the procedure but I think the funding issue may delay things as it is not my Healthcare trust.

Meggie, to be honest, I don't want Oscar to be put under a general. I am unsure why they think it is necessary to do that to release a tongue tie as I would be happy for it to be done without even a local. The piece of skin that ties the tongue has no nerve endings you see. I suspect that hospital policy says it must be done under a general just so they can refuse to perform the procedure. It is very frustrating though as they said if the maternity unit had referred him within days of the birth they would have snipped it straight away. Instead we have had to persevere with the shields and his very slow weight gain.

I was hoping to drop the night formula feed if we had the procedure done and feel too nervous about doing that now as he feeds every two hours for around 40 minutes to an hour on the boob during the day, I can sometimes eek it out to three hours if he falls asleep in the car or in the buggy whilst out for a walk. At least when he has 8oz of formula at night he will sleep for maybe six hours without wanting a feed. I think that because he has limited use of his tongue he can't massage the breast so that he can feed effectively. Getting what he needs takes so long and he is burning higher amounts of calories when feeding anyway.

 

[Neev]

So sorry Mildly you are still going through this..I really hope Oscar has his tongue tie sorted...

 

[claireyfairey]

How frustrating for you and poor Oscar Why they can't just do the procedure at birth, or within the first few days of birth is beyond me! It is so simple, and doesn't require a general...it's a complete joke that they want to put babies under general for tongue toe release

We're no further with Isla at present. We have a referral for a private appointment, so finally someone will actually look at Isla's tongue tie, as no doctor has bothered to as yet However that is costing £125 for the appointment alone, and we are told that the procedure could cost as much as £1600!!! So we definately can't afford that, and if that's what we are quoted we will go back to NHS I guess. I can't find any other places locally which do the op privately, or without the need for a GA.

I totally get your frustration Well done for persevering with breast feeding though, and Oscar's weight gain