Hi everyone
Just stumbled across this site, I hope you don't mind me posting here as I'm actually in the UK.
We have a gorgeous daughter who arrived on New Years Eve, and she has a cleft soft palate. As we have no history of this in our family, we have been struggling to find information and help on this (especially as it took the hospital 3 days to realise the problem) - the most apparent thing we have found is that different specialists and teams have different procedures. I thought I would tell you all what we've been told to date, and I would be very interested to hear in anyone's opinions on what they agree or disagree with, *especially* if you also have experience with a cleft soft palate only (since I'm sure additional lip problems add extra complexities with regard to surgery timings).
The first team we saw said they will only operate between 10 and 18 months old. They stated this was because surgery could affect the development of the jaw. They made no mention of hearing problems but stated that speech therapy would probably be required. They said the reasoning behind cleft lip/palate was still unknown. They made no mention of feeding problems. They did not fill us with confidence!
Team 2 at a different hospital said they operate at 6 months - they stated the reasoning for this is that the palate is essential for speech development and therefore needs to be fixed before they start forming speech sounds. They wait until then as they like the baby to be on solids (we must start at 12 weeks!) and to have built its strength up more. They said that the surgery will not affect jaw development, that this is only genetically affected. They sorted out our little girl's feeding problems immediately (we switched to soft squeezy bottles with soft teats). They said she will almost definitely need grommets for her hearing (ear tubes). They knew the latest information on researching cleft lip/palate and that geneticists have traced this to a single gene in mice etc etc. We have more confidence in this team but they are stating complete opposites to team 1!
We are seeing team 3 on Friday although we gather from initial discussions they run on similar lines to team 2.
Finally, I have seen from this site that others have had soft palate operations within weeks of birth. Does anyone know the reasoning behind this?
We have also been advised that increasing dosage of folic acid tenfold 3 months before and after conception will reduce the risk of another cleft problem by a factor of ten. Again, I've not seen or heard this elsewhere?
Oh, one last thing, the speech therapist strongly warned us against using dummies (pacifiers) as this restricts the movement of the tongue and the learning process of talking. I've not seen or heard this anywhere else but it certainly seems to make sense although I'm not sure it will seem so clever at 4am
I'd be amazed if any of you got this far, well done if you did I would be very interested in hearing your opinions, especially in terms of surgery dates...
Thanks!
-Mark.
England