Living With Anencephaly During Pregnancy

Receiving a prenatal diagnosis of anencephaly can be emotionally challenging for parents-to-be. This guide provides information about what to expect, how to adjust and cope, and finding support during the journey with anencephaly.

Understand Anencephaly and How it Affects Pregnancy.

Anencephaly is a serious birth defect in which the baby’s brain does not develop normally in utero. This can lead to physical and developmental disabilities, severe health issues, as well as death shortly after birth. Knowing more about anencephaly can help ensure parents are informed and prepared if they receive this diagnosis during pregnancy. It may be helpful to talk to their healthcare provider or seek out additional resources for more information on living with anencephaly during pregnancy.

Prepare Physically and Emotionally for Delivery.

It’s important for parents of anencephalic babies to prepare both physically and emotionally for the delivery. This can be a tough time, so finding support from family and friends can be helpful. Additionally, you may want to consider working with your doctor ahead of time to create a birth plan that includes options like skin-to-skin contact and placental sleep should the infant survive delivery. Furthermore, researching funeral service providers or donating your baby’s organs in advance can help make this difficult time just a little bit easier.

Find Organisations and Communities Who Know What it Is Like to Go Through This Journey.

It can be invaluable to find organisations and communities of people who have experienced a prenatal diagnosis similar to yours. Knowing that you’re not alone, and learning from the successes and challenges of other parents with anencephaly is incredibly important. Consider researching support groups or creating one yourself. Reach out to patient advocates for help or facilitating connections with other families. You don’t have to go through this process alone, so make sure you seek out the help, advice, and comfort of your community when needed.

Make Arrangements for Funeral Services and Memorials Ahead of Time.

If a prenatal diagnosis of anencephaly is made during the pregnancy, it’s wise to begin making funeral arrangements and memorial plans as soon as possible. Many parents do not expect that their child won’t survive long after birth and quickly become overwhelmed by the emotional rollercoaster. Begin to think about how you want to celebrate your child’s life before they are born—set aside time for special memorials or services and look into non-traditional funeral options ahead of time. This can help alleviate stress and ensure that your family will have meaningful ways to honor your baby now and in the future.

Consider Connecting With Other Families Going Through This Same Experience

Many other families are also going through the same experience. Connecting with others who have gone through a similar experience can be an invaluable source of support. There are online forums, local support groups and private social media pages that provide a safe space to connect with people both near and far who understand your unique situation. Taking the time to cultivate these friendships can help you feel less alone and find comfort during difficult times.

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