Anencephaly is a rare condition that impacts fetal brain development. Pregnant women are often told about the signs during their first few prenatal visits.
Anencephaly occurs in 1 in 1,000 pregnancies.
Whether you’ve just learned about your baby’s anencephaly diagnosis or have been aware of the diagnosis for a while, this blog is here to provide you with more knowledge. It is a difficult diagnosis to hear about, and it’s one several of our On Angels’ Wings families have experienced.
We hope this blog provides much-needed, honest insight into anencephaly, its prognosis, and medical facilities that offer care options for high-risk pregnancies.
What is Anencephaly?
Anencephaly is considered a fatal birth defect as it impacts the development of the baby’s skull and brain. The baby is typically born without parts of the skull and brain.
The defect happens because the neural tube (which grows the backbones, spinal cord, brain, and skull) fails to close or develop properly in the first month of pregnancy.
Types of Anencephaly
With a diagnosis, you learn there are three different anencephaly types:
Meroanencephaly: There’s only partial development of the brainstem and midbrain. Some skin and skull cover the brain. This type typically offers a slightly longer survival period than the other types, but it is still fatal.
Holoanencephaly: As the most common type found in utero, the brain doesn’t develop at all.
Craniorachischisis: This type means the brain, skull, and spine didn’t develop.
Prognosis
Sadly, the condition outlook is poor and often results in miscarriage or stillbirth. Babies with this condition, carried to term often pass during the delivery process. Those born alive typically live moments to hours at most.
The condition is typically discovered in the early months of pregnancy because the neural tubes should close between the third and fourth weeks. You can find out with screening tests if your child is at increased risk for having a neural tube disorder.
Getting an Anencephaly Diagnosis
Prenatal appointments occur frequently throughout pregnancy to help gauge the health of the mother and child. After screening tests, if a neural tube disorder is suspected, your provider will likely recommend diagnostic testing.
During these appointments, you may be asked to do the following:
Maternal blood screenings (known as a quad screen) – These detect four different substances in a mother’s blood that may indicate neural tube defects and other health concerns. This test happens between weeks 15 and 22 of pregnancy.
Ultrasounds – Starting around 16 weeks of pregnancy, women undergo this imaging test that uses high-frequency sound waves and a computer to show the baby’s tissues, blood vessels, and organs. This provides a look at how a baby is developing and if all internal functions are growing accordingly. At this time, a provider may be able to see an open neural tube defect.
Amniocentesis – This test requires a physician to use a long, thin needle to take a bit of the small amniotic fluid that surrounds your baby. This fluid will allow the provider to check for defects and is done between 15 and 20 weeks. This test may or may not be able to confirm small or closed defects.
Of note, while there are early screening options, most anencephalic babies are diagnosed during the 16-20 week early anatomy scan (ultrasound) performed at your OBGYN’s office. With an anencephaly diagnosis, your healthcare provider will offer insights about your baby’s condition, birth, and treatment plans.
What is the Survival Rate for Anencephaly?
Survival outside the womb is extremely low for babies with anencephaly. Children’s Hospital in Massachusetts estimates that 75% of babies are stillborn. The other 25% die within a few hours, days, or weeks after delivery.
There is a case of an infant who lived for 28 months and is considered one of “the longest surviving anencephalic infants who did not require life-sustaining interventions,” according to a National Institutes of Health BMJ Report.
Some women choose to carry to term so they can donate their baby’s viable organs.
Expectant parents of a child with anencephaly will need support and knowledgeable staff to answer questions, concerns, and fears. Finding a provider you trust is essential and can make an already difficult situation a bit more bearable.
Here’s a look at some options for care to consider:
Hospitals in OAW Service Areas
We always recommend getting a second opinion from one of the top care facilities in the nation.
Whether you decide on a palliative approach or to fight for your child is up to you, but here at OAW, we believe it’s your right as a parent to have all of the relevant information about your baby’s condition before making a decision.
Here are a few different hospitals to consider in our area:
Children’s Minnesota – High-risk pregnancies are treated here for babies with abnormal conditions, including anencephaly, congenital diaphragmatic hernia (CDH), congenital heart defect, and other conditions.
Lurie Children’s (Chicago, Illinois) – Anencephaly is among the fetal conditions this location treats, among other complications.
St. Louis Children’s Hospital (Missouri) – Grief services are available for parents to cope with the loss of their child.
Riley’s Children’s Health (Indiana) – This location treats more than 300,000 patients annually and also provides a full spectrum of services for high-risk pregnancies.
Note: Always be sure to call and see if the hospital or treatment center still provides the necessary surgeries or care as policies and options change often.
Additional Resources & Support
For those who receive the news, it’s important to have a solid support team — whether that’s in-person or online. Additionally, learning about the condition and that others have gone through a similar experience can help you feel less alone.
If you or a loved one have a baby in utero with anencephaly, please reach out to us for details on our free therapeutic grief support. We’d be honored to support your journey as you need it.
