stupid blood

This week I’ve had to accept the fact that there is a chance that our little guy will need to go under general anaesthetic in the next 6 months.

Petrified doesn’t really seem like a strong enough word to explain how this makes me feel.

Archer’s tongue-tie was detected at birth but the seriousness of it wasn’t truly noted until he was about 6 days old. We were referred to a pediatric surgeon with the understanding that there would be a very simple procedure done in that one appointment to fix his tongue-tie and off we would go. Apparently not.

In filling out the pre appointment medical survey, I told the doctor of the history of Von Willebrands in my family (my niece has the condition). This in itself is not an overly serious diagnosis. If the disease is present, prior to any surgery, treatment is given to ensure the blood clots correctly to avoid excessive bleeding.

Prior to this appointment I hadn’t even considered that my son my have this disease. I certainly hadn’t considered the fact that the tongue-tie snip may be a procedure that could be dangerous if he did have Von Willebrands. I’m thankful for the cautious nature and thoroughness of our doctor in detecting this as a concern!

DNALong and short of it is, they can’t test Archer for the Von Willebrands until he is 6 months old. They wont cut his tongue-tie until they eliminate Von Willebrands. Once he is older than 12 weeks, they wont do the tongue-tie procedure unless he is under a general anesthetic. Catch fucking twenty two.

So, what we decided to do was to test N and I to see if we are carriers of the disease (highly unlikely N is, the gene is in my family – but better to be safe than sorry!). Essentially, if we aren’t carriers, Archer can’t have the disease and snip snip we go. About a litre of blood taken later and as expected, N’s results are negative. Mine are inconclusive. Fuck fuck fuck.

We now have a referral to a hematologist for me to see if we can eliminate me as the carrier. Its not looking good but I will be doing everything in my power to beat the clock in getting some sort of result.

So the countdown is on. 7 weeks to go and I need to – get an appointment with the hematologist, discount me as a carrier (fingers crossed), get an appointment back at the pediatric surgeon and get my little dudes tongue fixed.

Or its general anesthetic time in October.

It terrifies me to think that Archer would have to have any sort of procedure. But the thought of him having a general anesthetic in his tiny body makes me feel ill.

I know its not a definite yet and there is no point getting anxious over something that may not happen but I am allowing myself to mentally prepare for the just in case. In the meantime, a warning to the hematologist and pediatric surgeon – I will be stalking you for appointments daily until I can get this resolved – the clock is ticking!

Have any of you lovely readers had to face surgery for your little ones?

Xx A

Ps… you can learn more about Von Willebrands here

15 thoughts on “stupid blood

  1. Must be frustrating for what is often such a simple procedure to take so much time. But definitely better to be safe isn’t it.

    • Sure is. I’m glad they want to make sure before doing anything but yep, frustration galore! Especially as we know the procedure will help him to be feel better when eating etc. Poor little buggier is getting exhausted from the extra energy it’s taking to use his tongue. Fingers crossed its sorted soon. X

  2. My son had to ha hernia surgery when he was 2. When he was one it was supposed to be fixed if we couldn’t see it anymore, but six months later sure enough there was a little bit of intestine slipping into his scrotum again. (apparently this is really common for little boys) Scared the heck out of me. I hated seeing him recover from anesthetic I will keep my fingers crossed for you that they can approve him to have the tongue clipping soon.

  3. Not fair to see little ones go under. I can imagine the fear it brings up… One step a time… Is all you can do, hard as it is…

  4. Just wanted to let you know that my youngest son had the exact procedure, tongue tie snipped under general anaesthetic, when he was about 9 mths old. He was out f theatre in about thirty minutes. He woke up quite teary, but I also wake up from a general crying so it could be a family thing. He was very sleepy for about 24 hours, but other than that he seemed fine. He recovered from the whole thing well, and I don’t really remember him complaining after the effects of the anaesthetic wore off. It is really hard to watch someone so small go through this, and I was able tobe with him until he went under, which I hated as watching him succumb to the anaesthetic was awful. But that was just one of these shitty moments we endure as a parent, so that they aren’t as scared of the whole theatre setting. Hope this helps, let me know if you have any other questions. Good luck with all of it. X.

  5. Its this kind of thing that scares me about one day being a mum – when/if I pass on my VWD, what if it is undiagnosed and my kid gets into medical trouble? You’re so brave, and I’m sure you’re little one will come out of it fine. Best wishes for the procedure.

  6. my son (now 3) had his tongue tie snipped at 2 and a half years old.
    They were so bad at diagnosing it in London.
    It was only when we came to Italy that they diagnosed him and told us he would never be able to speak (or eat properly) unless we did it – his was so severe. Posterior (so difficult to see – although i had spotted it from day One,but apparently i was stressed and neurotic…)
    He was operated at 2 and a half weighing 8 kilos and wearing 12-18 month clothes. Within 3 months he had put on 5 kilos!!!!! Was eating like a piggy and was in 2 year old clothes.
    It saved his life that op. And he can talk now – badly for a 3 and a half year old but he can ask for things. Before he was Ah ah ah ah ah ah ah and sooooo frustrated

  7. I’m so pleased I’ve found this post. I’ve recently had my daughter and have been told i need to be investigated for Von Willebrands. My concern is that my newborn daughter has tongue tie (which seems to have run through 3 of her siblings too) and they are talking of sorting it when she is 5 weeks old at the hospital. It’s only now just occured to me that surely until we’re sure I dont have it they can’t go ahead with her tongue tie procedure 😦

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