Ellie Lenter wrote: "I have a mom who delivered a baby with Pierre Robin
syndrome. I think it would be helpful for her to have another mom who has
had or is having experience breastfeeding a baby with these challenges."
That is a wonderful idea. I can't suggest anyone in particular, but I do
want to make sure you know that Jill Landis (an LLL Leader who is also the
mother of a son with Pierre Robin Sequence) has *just* had an article
published in LEAVEN, "Pierre Robin Sequence" (LEAVEN, Vol. 37 No. 5,
October-November 2001, pp. 111-112). She fed her son her expressed milk for
23 months using a Haberman feeder. It will likely take a few months to get
the article added to the LLLI website, but you can arrange to take a look
at it by contacting a La Leche League Leader in your area if you don't
subscribe to LEAVEN. The article lists the Pierre Robin Network
(http://www.pierrerobin.org) among its references. This web site includes a
message board that might facilitate the finding of a mother with experience
breastfeeding a baby with Pierre Robin Sequence. Jill's first LEAVEN
article, "Supporting the Human-Milk-Feeding Mother," (LEAVEN, Vol. 37 No.
1, February-March 2001, p. 3-6) is indexed on the LLLI web site, mentions
Pierre Robin Sequence, and can be read at:
http://www.lalecheleague.org/llleaderweb/LV/LVFebMar01p3.html).
LLLI can also be contacted to see whether any Leaders are registered in the
Leader specialty database as having personal experience with Pierre Robin
Sequence. Contact: LLLI Education Department, 1400 N. Meacham Road,
Schaumburg, Illinois 60173 USA; phone 847-519-7730; fax 847-519-0035 .
If you didn't already find it in your search of the LACTNET archives, you
might also want to take a look at my article, "Congenital Disorders:
Implications for Breastfeeding" (LEAVEN, Vol. 35 No. 6, December
1999-January 2000, pp. 123-28; available online at
http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html or via
the publications page of my web site at http://members.home.net/ammawell).
Best wishes to the mother and her family,
Cynthia
Cynthia Good Mojab, MS Clinical Psychology
(Breastfeeding mother, advocate, independent [cross-cultural] researcher
and author; LLL Leader and Research Associate in the LLLI Publications
Department; and former psychotherapist currently busy nurturing her own
little one.)
Ammawell
Email: [log in to unmask]
Web site: http://members.home.net/ammawell
***********************************************
The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html
|
