Before reading any further, we respectfully request that you please do NOT Google “anencephaly.” We will explain why shortly.

Anencephaly is the condition that took Dylan away from us. It is a neural-tube disorder that presents during the first 20 days of a child’s development. As our doctor explained it: during fetal development, the neural system essentially closes from the base of the spine to the top of the head, like a zipper. However, in about one in every thousand pregnancies, the zipper fails to close at the end. When this occurs, the top of the skull does not form, and the developing brain is generally left exposed to amniotic fluid. The condition is always fatal.

Medical experts contend that babies with anencephaly have approximately a 50% chance of surviving to delivery. However, if they reach the third trimester, they generally survive to term. It should also be noted that in a survey of 200 cases, the operators of found that 90% of babies survived to birth.

Anencephelatic babies who survive to delivery have approximately a 75% chance of actually surviving the delivery process. Of those who survive delivery, most will pass away within hours of being born. However, approximately 1 in 4 will survive for as long as ten days.

What do babies with anencephaly experience?

The medical consensus is that an anencephelatic child cannot see, hear or feel due to their under-developed brain. However, experience among those who have spent time with anencephelatic babies shows that they often will respond to lights and sounds. In fact, a girl born with anencephaly just one day after Dylan (in the same city) was recorded responding to lights and shapes.

Thankfully, we found no cases of anencephelatic babies exhibiting any signs of pain or suffering.

What do babies with anencephaly look like?

From the nose down, babies with anencephaly look completely normal. In fact, with a hat on, many anencephelatic babies are indistinguishable from a normal, healthy baby.

However, in some cases, an anencephelatic baby’s eyes will bulge. This bulging can range from subtle to extreme. This bulging is due to the lack of proper closure at the top of the skull, which often causes the eye-sockets to be either too large or too small. Above the eyes, the head will slope back quickly. Some skin or tissue may or may not cover the opening in the baby’s skull.

The reason we ask that you not Google “anencephaly” is that there are tasteful, respectful ways to photograph a child with anencephaly. Unfortunately, many of top search results fail to present images in a way the respects the dignity of the babies who have this condition.

Curiosity is natural and understandable. If you would like to see an illustration of a child with anencephaly, please click here. But again, out of respect for children with this condition, we ask that you not look elsewhere.

Causes and Prevention

The cause of anencephaly is unknown. Doctors are unable to identify any one particular behavior or risk factor that is linked with anencephaly. Therefore, parents learning that their child has this condition can be assured that nothing they did led to the condition.

On average, 1 in 1000 pregnancies will develop anencephaly. However once a couple has a child with anencephaly, the risk of recurrence for them is 1 in 10.

Fortunately for these couples, studies have shown that increased intake of folic acid is effective in reducing the risk of neural-tube disorders (like anencephaly) down to the normal “general-public” rate of 1 in 1000.