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Subject:
From:
Deborah S-Q <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Sat, 9 Jun 2001 22:22:52 -0400
Content-Type:
text/plain
Parts/Attachments:
text/plain (100 lines)
Date:    Sat, 9 Jun 2001 07:31:00 +0100
From:    Bev James <[log in to unmask]>
Subject: rare medical situation

Forwarded with permision:

-----Original Message-----
From: Lisa & Eric York [mailto:[log in to unmask]]
Sent: 08 June 2001 00:08
Subject: LLLeaders/friends:info needed for medical situation

Dear Leaders/Friends,
       I have a friend, Eva, who gave birth to a baby girl, Katarina,
two months ago. Katarina has Down Syndrome and had a large hole in her
heart, on which she had surgery 2 weeks ago.  A couple days ago tests
confirmed that Katarina's lymphatic tissue was damaged during the
surgery.  The lymphatic tissue metabolizes the more complex types of
fat, and due to the damage there was a leakage of fatty fluid.  This
fluid kept making it very hard for the baby to breathe on her own and
also lead to one of her lungs collapsing several times. The only way for
her to get better is by letting this tissue heal, and the only way it
can heal
is by feeding her a fat-free diet. There is a special formula called
Monogen (in Britain, Portagen in the US, I think) for children who
have this type of problem. Unfortunately, no one knows how long she will
be unable to have breast milk, it could be
anything from three weeks to three months. Eva has told me that it is
the policy of the hospital where Katarina is to keep on this diet for 6
weeks, whereas she has heard from other mothers with special needs
babies who have had to be on the fat-free diet for only 2 weeks.

Eva has also told me that this is an incredibly rare complication, but
has anyone heard of a similar situation, where the infant was ordered a
no-fat diet for this long? If so what has the breastfeeding mother
done?  I need some medical information for her.

Eva is worried that once this time of fat-free diet has expired, will
Katarina remember how to breastfeed?  Is there a way to put Katarina to
the breast without actually letting her take in breastmilk?  Eva is
still nursing a toddler, so supply is not an issue at this point.  Eva
is very determined not to abandon breastfeeding, and is devastated by
the turn of events.  She thought for sure that she would be able to
comfort her daughter with breastfeeding, and now she is being told that
is not possible because of the surgery complications.

The baby's got a nasogastric feeding
tube in now and Eva might insist that this be kept in until this tissue
damage is healed, so as not to have to use a bottle. Also, Katarina has
a strong sucking need, and the nurses have started to give her a
pacifier. This really seems to help
her settle, which Eva is happy about, but what about nipple confusion?
If she can't have a pacifier, what can she suck on
instead? Are there pacifiers available that simulate much closer, the
breast? Is there something else to use?

Please respond with any related information as soon as possible.  I will
be out of Britain to visit Maryland from June 9-18, and thus unable to
access my usual e-mail, but I can access the following e-mail from
anywhere:   [log in to unmask]
It may be helpful to just send any responses to both my e-mails at the
same time. It would be more for my convenience when gathering the
responses into one place once I do return from my visit.  The other is
the reply e-mail on my message: [log in to unmask]

I can also be reached by phone in Maryland during the above times, at
(friend's house) 410-969-8289,
or (my parents in Virginia) 540-972-7856

Please also send information directly on to Eva as well at her e-mail,
[log in to unmask], or she can be reached by phone at 01423 780 016,
within Britain, and from the United States, 011 44 1423 780016.
Any related information, help, support you can pass on to Eva and I will
be gratefully accepted.
If you know of anyone who has not been sent this message who may be of
help, like Dr. Sears, and other pro-breastfeeding medical professionals,
please feel free to pass it on.

Many thanks in advance,

Lisa York,
Former Leader, LLL of Ft. Meade, MD;
Leader, LLL of Nidderdale,
North Yorkshire, Great Britain
>>>>>>>>>>>>>>>>>>>>>>>>>>

------------------------------
If anyone has ideas for this poster it would be great if they could post
them on the list in addition to privately responding so we can all learn
from it.Thanks
Deborah Sowery-Quinn
Ontario, Canada
_________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

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