Cleft Palate/Pierre Robin sequence

[racmun]

Hi

My 10 week old dd was diagnosed at birth with Pierre Robin sequence (cleft palate and small chin) she also has really bad reflux which 10 weeks on finally seems to have settled down thanks to Ranitidine, Dom Peridone and anti reflux milk.

However we cannot get her to sleep on her back initially we thought it was due to Reflux but now this is under control she is still squirming all night long.

She's been into hospital for a sleep study at 4 weeks old and they said she did desaturate but it was self correcting, last night however her breathing was Laboured and she gasped a couple of times.

We ended up putting her on her tummy to sleep and she calmed down and slept through, her breathing calmed down and she wasn't makung grunting noises/ gasping.

I've spoken to her outreach nurse who said 'lots of cleft babies can only sleep on their tummies but I can't advise you to do that..'

I know the safe sleep guidelines say back is best, but surely it's safer for her to be on her tummy without her tongue falling back and obstructing her airway.

I am despairing as I don't know what to do for the best has anyone else been in this situation?

Thankyou

presumably you have a paed?Speak to them ( contact he secretary, be polite but insistant) .What about on her side?

Should add we have a Sleep Apnoea mat in her cot

A blog called 'patch of puddles'. Goes from the birth of a daughter with cleft palate, right through to her being a teen. Might help.

Hi, we were advised by our cleft team to sleep our dd on her side, which we always did. I do remember feeling bad that this was against the guidelines, but on her Back was very bad for her breathing. We put rolled up little blankets down the side of her cot to stop her rolling onto her front.

Our little girl (14months) also has pierre Robin sequence and a cleft palate.. we were advised that she should only sleep on her front at first and as she got bigger her front. The upside (downside?) was she learnt to crawl and walk way earlier than the other two as she was so comfatable with being in her tummy. Does she have an apnoea monitor?