Ami,

First of all, this BF dyad is lucky to have your support. So, I have several questions and thoughts...Why is she being told that her baby will never be able to BF? Is she latching at all? If so, are they worried about aspiration or just that she won't get enough calories from the breast? As we all know, BF is more than just getting calories. If she is primarily getting her calories via NG (or G-tube possibly in the near future), then BF would just be icing on the cake. Whether she is breast or bottle fed, we would want her to continue to orally feed, unless it is contraindicated bc of aspiration precautions for example (but you did mention that she is taking a bottle).  I have worked with many babies who require a G-tube for various reasons, and you want them to have as much positive oral experiences as possible.  She needs to continue to work on her sucking and oral skills, and what better way to do that than at the breast. I have had several babies who contd to breastfeed, but just needed those extra calories (eg. reduced stamina or significantly low tone). Are they bolus feeding her or is it a continuous feeding? That will impact her hunger, and can be modified to help with oral feeding/breastfeeding. If bolus fed, oral feeds or attempts can be integrated along with tube feeds. As Catherine mentioned, you would also want to make sure you optimize her positioning and stability while on the breast. If not latching yet, you can use various techniques used for non-latching babies to help her to breast.  If BF you can help mom modify flow at the breast (either stronger w breast compressions or she may need to slow the flow down if too fast/strong for her). If she doesn't already have one, I would strongly recommend finding a feeding therapist (OT or SLP), who works w medically complex babies and feeding tubes, who is also knowledgable, or at least supportive of BF and who would be willing to work closely w you.  The SLP or OT would have a conversation with mom about pros/cons of G-tube vs NG tube to help with the decision making. I did once have baby who had an NG tube for several months ( like close to a year!) and continued to nurse even after it was removed. She did amazing and was never bothered by the tube. Her mom was also incredible with her and they had a lot of support. This is not the typical case, but did work for them.  Although it's important to provide Mom with the information, it's just as important to meet her where she is. It's a process and she just may not be ready to hear it all yet. The diagnosis of Prader Willi and the thought of a G-tube is incredibly overwhelming for parents. Just give Mom (and baby) time and a lot of support...

I hope that helps!

Nina

Nina Isaac, MS, CCC-SLP, IBCLC, LLLL
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On Jun 28, 2014, at 9:00 PM, LACTNET automatic digest system <[log in to unmask]> wrote:

> 
> Date:    Sat, 28 Jun 2014 22:43:03 -0400
> From:    "Catherine Watson Genna BS, IBCLC" <[log in to unmask]>
> Subject: Re: Prader-Willi syndrome
> 
> 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
> 

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