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Subject:
From:
Trish Jalbert <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Tue, 4 Mar 1997 15:02:54 -0800
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I suppose this would be a good time for me to jump in.  I'm a La Leche
Leaguer from northern California, and the mother of two girls.  My eldest
daughter had Down snydrome, but died when she was 3 months old from
incredibly unusual complications to heart surgery.  Approx 40% of children
with DS have heart problems.  I've been reading Lactnet for about a week,
and it's been very interesting and informative.

I'm sending a different note (full of resources) to Donna personally, but I
just wanted to say I have some resources about feeding infants with DS.
I'd LOVE to hear more, however, so anyone with particular experience-
either positive or negative- please write me directly.  My daughter Miranda
was mostly fed expressed bm through a nasal gastric feeding tube, although
she did nurse about 5-6 times.

My personal experience gives me this to contribute: the main feeding issues
for infants with DS can revolve around the complicating medical conditions
they might have.  As I said above, about half of them have heart problems
which will require surgery sometime between 3 months and 9 months
(sometimes even closer to 12 months) of age.  If you have worked with NICU
infants with breathing problems, you are surely aware of good techniques
for dealing with this.  The common procedure here was to concentrate the
ebm with formula powder, as if often done with preemies.  This was done
either to a 27 cal/ounce level or a 30 cal.ounce level in order to give 1)
extra calories and 2) less fluids as infants with heart disease often
retain water.  I'd welcome any medical professionals' thoughts on this.  I
think our hospital- Children's Hospital Oakland- was very supportive of bf,
but one never knows if that's in fact the best procedure.  Had we been able
to get Miranda entirely on the breast, that would have been more than
acceptable to her medical team, however.  That was the ultimate goal.

About 12% of infants with DS have bowel disorders, but I personally do not
know if these complicate feeding.  I am under the impression that these
require surgery within a few days of birth, however.

Infants with DS also all have some level of hypertonia, and this often
results in a weak suck, which obviously can be an issue.  I am under the
impression from the staff at Children's, however, that breastfeeding is
preferable and an accomplishable goal in most cases.  Certainly, the
immunological protection of breastmilk is more important than usual for
infants with DS, who often are more susceptible to infections than regular
healthy children.  Among other things, they have smaller eustachian tubes
than regular infants.  Most of the other benefits of breastfeeding over
feeding artifical baby milk are also reasons why infants with DS need
breastfeeding *more* than other infants.

It is my understanding that otherwise healthy infants with DS- ie those
without heart or bowel disorders- might have some feeding issues, but that
these can be overcome.  Even Miranda, who breathed on average 100 x/minute
and had problems with low O2 saturation levels (she had AV Canal) was able
to breastfeed (although not often or for long), once she was more stable.

The LLL publications on breastfeeding the infant with DS are very helpful
in dealing with the otherwise healthy infant with DS, and I would encourage
you to read these.  I found them less than helpful in dealing with Miranda,
and am actively looking for literature I could hand out to Moms of infants
with heart problems or other severe medical issues.  Anybody have anything?

For more information about DS in general, the best source on the Internet
IMO is the March of Dimes web page.  URL:
http://www.noah.cuny.edu/pregnancy/march_of_dimes/birth_defects/downsynd.htm
l  This page is offered in Spanish as well as English.

As far as the AFP/Triple Screen, my personal triple screen indicated a risk
of 1 in 33, so I would not discount the result entirely, although of course
the odds are still with your SIL.  I was 24 when I conceived Miranda, so my
"regular" risk was 1 in 1,200.  I have wondered if perhaps the change in
risk is not more significant than the actual result- if anyone has any
information regarding this, I would really enjoy reading it.  I chose not
to have an amnio due to similar fears as Donna's SIL.  Subsequently, I have
decided that the benefit of knowing about a possibly fragile neonate
outweighs the risk of the amnio, given that the amnio is done by a doctor
with considerable experience.  Miranda had severe meconium aspiration, the
comlications of which almost killed her at birth.  My OB tells me that
newborns with chromosomal abmormalities have problems at birth (such as
meconium) far more often than healthy infants.  I do strongly believe that
adequate preparation plays a part in getting breastfeeding off to a good
start, though, and I'd say knowing what the baby's special needs might be
would be a part of this.  This is obviously a matter of personal choice,
however.

Lastly, I have to say that in today's world, people with Down snydrome can
live full lives full of happiness, and that they can give their families
the same level of joy that any other child or adult can.  I would have been
happy to raise my daughter Miranda had she lived.

Sorry for such a long note, and thank you for all the wonderful things I am
learning here on Lactnet.

Tricia Jalbert

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