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Subject:
From:
Darillyn Starr <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Fri, 26 Mar 2004 20:59:24 -0700
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There was a thread on this a couple months ago, so you may want to look in
the archives!  I had a niece, born in 1980, with arthropryposis.  From what
I know about the disorder, hers was more severe than many.  She did have
some trouble breastfeeding, initially.  Mom had already breastfed two babies
for a total of about three years, which was a definite advantage.  She was
pumping and feeding with premie nipples for a week or so.  Then, baby
started getting dehydrated.  The dad watched her sucking and felt that the
premie nipple was collapsing when she sucked.  They tried her at the breast
again, and she figured out how to nurse effectively, and thrived from that
point on.  She continued to nurse for about 18 months, and her health was
excellent.  She had surgery at two months old, which she bounced back from
quite well.

I don't know how likely it would be for another baby with arthrogryposis to
have the same experience as my niece, but hopefully, just knowing that one
baby with quite a severe case nursed successfully, after some effort, would
be encouraging for this mom.  I suspect that the fact that my SIL had a
pretty active let-down may have made it easier for the baby, whose facial
muscles were definitely affected, to express the breast.  Perhaps in some
cases, a feeding tube device could be used to help provide more milk at the
breast, if the baby had difficulty getting enough milk directly from it.  I
did once work with a baby who, although never officially diagnosed with a
specific disorder, had a persistent weak suck that defied all efforts at
improvement.  This mom used the Lact-Aid to provide a few ounces of EBM
during feedings and then pumped after feeds for the milk for the Lact-Aid
for the next feeding.

Best Wishes,
Darillyn

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