sub-mucous cleft
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my son is three months old and was diagnosed with a sub-mucous cleft at 10 days old. Initially he fed well using mead jhonson squeezy bottles with nuk teat. however at 6 weeks old he contracted bronchiolitis and was admitted to hospital for a week where a nasal gastric tube was inserted (as they do for lots of babies, irrespective of any prior feeding difficulties). when we were discharged the tube stayed in for 5 days until my son's feeding was back on track. however, his feeding started to deteriorate and he seemed unable to take the bottle - he would take a few sucks and then start screaming. the tube was therefore reinserted. our speech therapist did a swallow study which had been initially not deemed necessary as the first speech therapist we saw said that our son swallowed well. apparently the swallow study showed 'pooling' of milk in the mouth which can be a risk for aspiration. we were therefore advised no oral feedings and now we are being told our son must have a gastrostomy.
has anyone had a similar experience? i don't understand how my son's swallowing and feeding can have deteriorated so dramatically from being totally bottle fed to totally tube fed. and now I'm worried that the palate repair surgery which is due to take place when my son is 6 months old will not solve the problems.
has anyone experience of a sub-mucous palate being repaired and did things improve following surgery?
I would love to hear from anyone who has any experience of sub-mucous clefts at all, as I have so little information on this subject.
has anyone had a similar experience? i don't understand how my son's swallowing and feeding can have deteriorated so dramatically from being totally bottle fed to totally tube fed. and now I'm worried that the palate repair surgery which is due to take place when my son is 6 months old will not solve the problems.
has anyone experience of a sub-mucous palate being repaired and did things improve following surgery?
I would love to hear from anyone who has any experience of sub-mucous clefts at all, as I have so little information on this subject.