After the Diagnosis

Most parents find out that their child has anencephaly after going to a routine ultrasound or getting blood work done early in the pregnancy. As 90 percent of parents with anencephalic children have no family history of the disorder, such a diagnosis can be horrifically surprising. In the aftermath of a diagnosis, families are faced with grief and difficult choices.

Gather Information

Before their baby is diagnosed with the disorder, it’s unlikely that the child’s parents have even heard the word “anencephaly” before. The clinical explanation of the disorder by a doctor or health care worker can only make it more gruesome and frightening. Gathering relevant information is the first step in demystifying the disorder and coping with the situation. Here are some good sources for anencephaly information:

  • Medline Plus: The government’s National Institute of Health maintains this information portal about anencephaly.
  • Anencephaly Fact Sheet: Here you can find basic facts about anencephaly and a diagram of the anencephalic brain.
  • Facts About Anencephaly: The Center for Disease Control’s page about anencephaly covers causes and risk factors behind the disorder.

Making the Decision

After a diagnosis of anencephaly, parents of the unborn child may be faced with a decision to carry the baby to term or to electively end the pregnancy. Those who are decidedly pro-life in all cases may not feel that they have a decision to make, but others may find themselves with questions.

Choosing to end the pregnancy through abortion or through induced labor prior to the viability of the child could be the most appropriate way to cope with the anencephaly diagnosis for some parents. Ending the pregnancy can keep the mother from experiencing the grief of knowing that she is carrying a likely stillborn infant to full term. It can keep parents from extending the grief process and potentially allow them to try again for a healthy infant.

On the other hand, parents who consider an unborn child to be a person may find the thought of ending the pregnancy immoral, even if the child will not survive long past birth. Carrying the pregnancy to term also leaves the chance that the baby could be an organ donor, to aid other infants who desperately need help.

Whatever your feelings about the issue, your choice will be highly personal, and it won’t be easy. Gathering more information about the issue and seeking counseling from your doctor and a psychologist is a good idea.

More Information:

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