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Forwarded message:
Subj:    Spina bifida
Date:    96-07-17 12:56:32 EDT
From:    JoeMLMcgee
To:      <[log in to unmask]>
CC:      [log in to unmask]

Hi Angela,  I'm a lactation consultant with 27 years NICU experience.  I have
cared for many spina bifida infants.  Most recently I had a German Air Force
family with a baby who also had a vocal cord paralysis and hydrocephalus.
 This mom had wanted to breastfeed but because the baby wasn't able to
swallow & had increased risk for aspiration, a gastrostomy feeding tube was
placed, the mother rented an electric breastpump and fed her milk through the
feeding tube for 6 months.  Her baby also had an atonic bladder which meant
that she required urinary catheterization every 4 hours during the daytime
hours.  This, of course, really predisposes the baby to infection.
 Throughout the babys early months, she received protection from infection
through the mother's milk.  She travelled to Germany & Hawaii, was exposed to
lots of different people and never contracted so much as a viral infection.
 This is a great story to prove the effective protection babies receive from
their mother's milk.  I am discouraged that the family you describe sees
breasts as erotic objects rather than the physiologic function of nutrition.
 Perhaps you can emphasize the importance of protection from infection
through the mother's milk to this father.  I cannot emphasize the importance
of Genetic counselling for this family enough.  The mother's reluctance to
have another child & not breastfeed may merely mean that she is afraid she
might have another child with spina bifida.  According to literature I have
read, for most couples the chance that this will happen again is about 3-5%.
 However, there are of course, differences among families, and it is
important that families get individualized genetic counselling to learn more
about their own risk factors.  I have a book, A Parent's Guide to Spina
Bifida published by the University of Minnesota Press.  You may obtain a copy
by sending your request to 2037 University Avenue Southeast, Minneapolis, MN
55414.  I don't have a phone number but perhaps you might find it through
directory assistance.  I hope this information helps.
Thanks for your interest. By the way, the baby I described is one year old
next month, and I'm going to her birthday party!

Mary Lou