Quesionnaire Cleft Lip and/or Palates and Breastfeeding

[ewe+lamb]

Hello

I am studying for a lactation qualification, for my thesis I have chosen to study Cleft Lip and/or Palates.

I have been a breastfeeding mother-to-mother volunteer for a number of years and wish to have a qualification which gives me the opportunity to expand my knowledge and experience. 

For your information I have contacted the Moderators of MDC for permission to submit this thread as a means to having a broader more international scope.

I would like to gather a significant number of parents from diverse backgrounds who would like to take part in this questionnaire, your accordance for the publication of this information will be requested and anonymity will of course respected, the questionnaire focuses on the experience of the parents and children, the manner in which breastfeeding was approached, if and how your breastfeeding goals were taken into consideration and if the goals were realised.

If this questionnaire interests you please contact me by PM and I shall add you to my contact list stating whether you would like the questionnaire in english or french.

Many thanks, in advance.

ewe+lamb

[momtoalexsarah]

PM comming from me, my youngest DD was born with a submucus cleft palate, late diagnosis, Bfing issues. Bottle fed EBM till 3 months then BF exclusivly till 16 months and BF till 2.5 years

[beenmum]

I will PM you also. But my cleft kiddo was tubefed.

Your PM wont work. You could PM it to me if you want.

[ewe+lamb]

Hi Thank you for volunteering, I actually posted a reply on Tuesday night but it must have got lost in cyber space, anyway thank and I shall be sending the finalised questionnaire out to you in the next couple of weeks, I really appreciate you both volunteering, if, by any chance, you know of other parents who may wish to take part in this questionnaire, I am most happy that you give them my private email - [e-mail]

Many thanks once more!

ewe+lamb

[beenmum]

Will do.

But do you want just cleft palates? Or are you looking at things like Pierre Robin, that cause cleft palates....but also have a jaw malformation that makes breastfeeding impossible? (since you are doing it for a lactation course)

[momtoalexsarah]

I think looking at PRS as well would be wise - Megan had PRS (not severe but  enought that latch was imposible untill her jaw grew out some) I know of a couple people that may be able to help out.

[beenmum]

That would be a great idea. I know the rate of breastfeeding with PRS kids is really low, I am so happy to hear that it is actually doable tho.

My DD has it also. We ended up having to tube feed. Her jaw, b/c she is syndromic, still is way too far back. We will probably have to have surgery.

[ewe+lamb]

Certainly to include children with PRS would be possible I would just have to adjust the questionnaire slightly, but certainly doable, if you're willing and able - so am I!!

Thanks you so much for your help with this!

[ewe+lamb]

Here's the questionnaire online - let me know if it works!! LOl First time I've done this sort of thing!

http://xrl.us/rachellamb

[momtoalexsarah]

It seems to work ok , but it times out on me alot.  It is possible I get an email copy of it - I belive I sent you my email in a PM

[ewe+lamb]

Yeah sure I'll get one to you!!  Sorry - was trying to see if it was more time efficient - evidently not!!  Thanks for your in put!

[beenmum]

Okay, finished it.. I would like a copy of it also when you have time. Thank you.

[ewe+lamb]

Absolutely - I keep you all informed and send a copy to you all.  Thank you very much, once again!

rachel