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Date: | Wed, 25 Jun 2014 07:04:23 -0400 |
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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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