About half of anencephalic babies are born alive.
Of these children. about 25% live 3-5 days, another 50% live up to 10 days, and the remaining 25% live up to 15 days, with a rare few living months or years.
Some anencephalic babies are able to nurse or drink a bottle. There is a special bottle made by Medela called a Haberman Feeder which can make it easier for a baby who has a sucking motion but has difficulty swallowing to feed normally.
Care of their heads is difficult to get down to an exact science, but some parents use a triple antibiotic cream over the top of their heads. followed by a Vaseline coated bandage and then a regular bandage. This Vaseline bandage does not stick when removed. Most parents with living anencephalics change their dressings about two times a day.
Mom may want to express breastmilk for her baby, in which case an electric breast pump can be very helpful. These ideas were compiled by mothers whose babies did not live as ways for us to create memories of our children. Many of us find it important to name our children, even if they were born early, stillborn, or only lived a few minutes.
Older children may want to meet their brother or sister. and we have found that generally it can help them understand what is happening in their family if they know the child who has died. I told my 2 and 4 year old that my daughter had a "broken head" which meant that she would not be able to live with us, that she could not live with a broken head.
You can make plaster hand and footprints of your child with kits available at arts supply stores,
Videotaped Sonogram make a cassette tape of their heart beating during a prenatal exam with a Doppler.
Cut locks of hair and fingernails. Save cord clamp and any clothes the baby wore.
Take LOTS of pictures.
Dry and press any flowers from a funeral. I made a wreath out of mine which hangs over my bed.
Take good care of yourself nutritionally and physically.