Anencephaly | Bethanie & Everly's Stories

BakerBy: 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.

Leigh 29

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.

Spinal Muscular Atrophy

IMG 0887a-OAW 600 x 400By: Teneka Huffman

Everyone remembers their first: their first job, their first heartache, the first time they realized what they were put on this earth to do. Meeting Logan Ruth encompassed all those firsts for On Angels' Wings.

Logan was the child that made such and impact on our Founder, Michelle L. Cramer, that she immediately started OAW. Meeting the Ruth family and seeing Logan's incredible smile showed us that making positive memories with our local families is what On Angels' Wings was created to do.

Logan was diagnosed with Spinal Muscular Atrophy (SMA) and battled for 10 months. SMA is caused from a defective gene that encodes the SMN protein. This protein is crucial for the survival of the cells in the spinal cord that are responsible for muscle contractions. When there is not enough SMN protein produced, muscles become weaker and atrophied. Muscles closer to the center of the body are typically the first affected, so those born with SMA either do not have the ability to walk, sit, or stand, or they lose that ability over time. There is also a strong possibility they will develop respiratory issues.

SMA is very similar to ALS/Lou Gherig's disease in the fact that both are motor neuron diseases. ALS progresses more as the patient ages, but the earlier the onset of SMA, the greater the impact on motor function. ALS is more widely known, however, ALS affects one in every 500,000 adults, while SMA affects one in every six to ten thousand infants. SMA is the number one genetic killer of children under the age of two, yet is still considered to be a rare disease. One in every 40 people is a carrier, and a simple DNA test is all that's required to determine if you carry the gene.

Logan's legacy lives on, not only through his contribution to the development of On Angels' Wings, but through the organization his family started too. The Logan Ruth SMA Foundation was established to raise awareness for SMA, support newly diagnosed families, and help the search for a cure. Check out the Logan Ruth SMA Foundation on Facebook—there are lots of ways to donate, participate, and get involved.

One beautiful thing with SMA is that cognitive function is not lost. Children with SMA typically have traditional brain development. One can only hope that along with cognitive development comes emotional development as well. SMA may steal a child's ability to stand, but it cannot steal the ability to love and BE loved.