On 6/25/2014 12:46 AM, Ami Burnham wrote:
> 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.
>
> ...  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.
>

Amy,
IMHO, we have two major problems here: (a) genetic syndrome that is 
known to cause significant muscle weakness, facial abnormalities 
("triangular mouth") and feeding difficulties in infancy that can lead 
to failure to thrive and (b) iatrogenic problem, caused by suboptimal 
medical intervention.

Unfortunately, we can not do anything with genetics here, but we 
definitely can and should help the kid with her problems that she will 
be experiencing for months to come.

For G-d's sake - this kid is struggling to suck anyhow and now she is 
demanded to do a double job trying to feed with the tube inserted 
through her nose into her stomach, irritating all that important 
structures on the back of her throat!

Therefore I would highly recommend TEMPORARY (for several months only) 
g-tube placement in order to avoid any unnecessary irritation of 
oro-pharynx as well as unpleasant sensation in the same area and 
aggressive feeding therapy addressing issues related to the primary 
problem - low muscle tone and (if present) peculiarities of her oral 
anatomy. Working with a good PT, OT and feeding therapist will benefit 
this kid greatly. If you have a reasonable Early Intervention Program in 
your area - teaming with them can be extremely instrumental. If not - 
going through medical insurance is another possibility.

But I would start with praising mom on her efforts while explaining the 
said mom the detrimental effect of the NG tube in her kid's situation.

Alla

-- 
Alla Gordina, MD, IBCLC, FAAP
General Pediatrics
Breastfeeding Medicine
Adoption and Foster Care Medicine

Global Pediatrics and Family Medicine
NJ Breastfeeding Medicine Educational Initiative

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