NMF_Comm

Megan - The National Marfan Foundation, has free information that is specific to nurses. Even though you are looking for information specific to newborns, you may be able to pull out some information that you can apply to that situation from the NMF's new CD ROM specifically for school nurses. Go to the National Marfan Foundation website (www.marfan.org) to find out how to get it. Or, you can call the NMF's Information Resource Center (800-8-MARFAN, ext 26) and talk to the nurse who staffs that number. Even though other specialists may have primary responsibility, the nurse plays a vital role. So many doctors don't recognize the signs of Marfan syndrome, even when the baby is the first in the family to be affected (and the signs may not be prominent at birth). Also, in so many cases, the affected parent might not know he/she is affected. (Half of those with Marfan syndrome in the U.S. do not know that they have the disorder.) If you need anything else, post here and I will check back.