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 > *********************************************** 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