Anencephaly | Bethanie & Everly’s Stories

By: Kim Patterson

The very first baby born into Heaven that On Angels’ Wings founder, Michelle Cramer, had the honor of photographing was Bethanie Baker. Bethanie’s parents were told at a routine ultrasound that their baby had a condition called anencephaly and would likely not survive childbirth. Michelle, was invited into the delivery room shortly after the birth and took some very impactful pictures that solidified precious memories and sparked lifelong bonds. The experience touched Michelle so deeply that she has been photographing families in similar situations ever since.

There is a lot of important development that occurs in the first few weeks of prenatal growth. One of the significant advances that occur during this time is the closing of the end of the neural tube and subsequent development of key areas of the brain, as well as the growth of the scull and scalp.

Anencephaly is a condition that occurs when the end of the neural tube fails to properly close. Babies born with anencephaly are typically missing portions of their skull and brain, and only live for a few brief moments if they are able to survive the birth process.

In most instances, a woman who is carrying a child affected by anencephaly will not notice anything out of the ordinary with her pregnancy. Children suffering from neural tube defects tend to have higher levels of the protein alpha-fetoprotein (AFP), which is revealed in maternal blood test results. The first ultrasound during pregnancy may also reveal anencephaly. An amniocentesis or further ultrasound testing often follows to make a more accurate determination regarding the condition.

In the years since Bethanie’s birth OAW has photographed many other babies born into Heaven, including that of little Everly Faith, also lost far too early to anencephaly. Born nearly six years after baby Bethanie, the photos of Everly’s birth and life celebration are no less moving and poignant.

As was the case with both of these babies, anencephaly often leads to miscarriage or still-birth. In instances when a baby with anencephaly is born alive, he/she usually only lives a matter of hours. Only a small percentage of babies with anencephaly make it beyond their first day. Though there is little that can be done to ease the pain of parents and other family members who have loved a child with anencephaly, this condition doesn’t appear to be genetic.

Since Bethanie’s birth, the Baker family has added two beautiful children to their family. The photos Michelle took of their little girl grace the Baker’s walls and they talk about her with their children often. Everly’s parents, James and Tiffany, are expecting their rainbow baby this year, believing that Everly is watching over them, and they will teach this spark of joy all about his/her beautiful big sister, with the help of the images On Angels’ Wings was able to provide.

Share This