In a message dated 6/9/01 9:13:32 PM Pacific Daylight Time,
[log in to unmask] writes:
> From: Deborah S-Q <[log in to unmask]>
> Subject: forward of a request for help
>
> 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
>
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