Anencephaly is a congenital birth defect, this means that your baby’s brain will not fully develop. Although many babies that are diagnosed with anencephaly may live for a few moments and up to a few hours, this condition is fatal and unfortunately there is no known cure at this time.
Families that have received the heart wrenching diagnosis of Anencephaly may not have the typical pregnancy/birth experience. Pregnancy can be a very special time to bond with and spend time with baby while you have the opportunity to do so. While the mother is pregnant, the baby can continue to grow and develop but necessary functions can’t continue for very long after the baby is delivered. Many anencephaly babies live through pregnancy to birth, some die during delivery and many others are born before due date resulting in stillbirth. The babies who make it through delivery may live for a few seconds, minutes and possibly a few days.
Symptoms and Traits of Anencephaly:
(may not be the same for every case)
Absence of skull
Folding of ears
Lack of ability to feel
According to the CDC, 1 in every 4,859 babies in the U.S born with Anencephaly annually.
1 out of 10,000 pregnancies in U.S are affected by Anencephaly each year.
How is Anencephaly diagnosed?
Anencephaly is often diagnosed early (between 11 & 14 weeks gestation) by :
- ultrasound - Alpha-fetoprotein
- blood work - Amniocentesis
Your grief is real, take it slow and enjoy the time you are gifted with your baby. First, prepare for you baby’s birth, welcome them into the world, bond with them, take pictures, introduce them to family and friends who are with you at the hospital. Name your baby, hold them, bathe them, and take their footprints just as any new parents would. Next, prepare your baby’s farewell. Decide on your memorial or funeral plans. Planning your child’s farewell may be difficult yet helps in many ways toward gaining closure in your grief. Again, go slow, this is your journey, don’t feel rushed to make decisions that can’t be reversed. Your baby is a person, they are a part of your life and a nice farewell plan helps to bring dignity to that short, sweet life.
Butterfly or Dove Release
Memory chest filled with baby’s belongings
Shadow box filled with baby’s belongings
- Offer support
- Don’t pressure the parents into making decisions
- Making life changing decisions can be hard for parents who know that their time will be limited with their baby, allow them the time to decide what is right for THEM
- Just be there
- Pray for the family
- Hold the baby, if you and parents feel comfortable
- Be patient
- Allow parents the time to process their new situation
- Know that grief is different for everyone, everyone involved will grieve in their own way on their own time
Support and Resources