Babies with Prader WIlli syndrome have very low muscle tone, so whatever 
you can do to support the baby's body and face/jaw/tongue at breast will 
help. I've seen several kids with PWS and if mom works hard, baby can 
learn to transfer at least some milk. If you look at the Clinical Corner 
page on my website (URL below) there are some other supportive 
techniques that I've found can be helpful that are not in the first two 
editions of SSS (but will be in the third).

Catherine Watson Genna BS, IBCLC  NYC  www.cwgenna.com

On 6/25/2014 12:46 AM, Ami Burnham wrote:
> PTP: G3P3, breastfed first two children very successfully for over 1 year, I worked with her with both. Her third baby, a girl, was born 2 months ago and after 1 month of extensive hospitalization was diagnosed with Prader-Willi syndrome.  At that time they put an NG tube in her daughter and told her that she would never be able to breastfeed.  The mother refused a G-tube. The baby is now getting 600ml per day of ebm through the NG and 4, 5ml bottles of hind milk per day, which she takes, although very slowly.
>
> Mom has a robust milk supply, and would really love to breastfeed, and while she knows that it will almost certainly not be exclusive, even 1x/day would make her very happy. I have no experience working with a baby with Prader-Willi, the mom knows this, I have offered to be a resource to the extent that I can be and an ally in this process.  I have only spoken with her on the phone at this point and I am seeing her for the first time in 2 days.  I have been looking at Supporting Sucking Skills and there is certainly good information there but I would love anything, any of you have to offer.
>
> Thanks so much
> Ami Burnham LM, RN, IBCLC
>
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