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

             ***********************************************

Archives: http://community.lsoft.com/archives/LACTNET.html
To reach list owners: [log in to unmask]
Mail all list management commands to: [log in to unmask]
COMMANDS:
1. To temporarily stop your subscription write in the body of an email: set lactnet nomail
2. To start it again: set lactnet mail
3. To unsubscribe: unsubscribe lactnet
4. To get a comprehensive list of rules and directions: get lactnet welcome