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. *********************************************** 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