A Definition of Acrania: A fetal anomaly characterized by a partial or complete absence of the top portion of the skull, with complete but abnormal development of brain tissue. The condition is frequently associated with Anencephaly and is considered by the medical community as "incompatible with life." This anomaly appears during the beginning or end of the fourth week of fetal development, when the anterior neuropore closes. The desmocranium normally becomes the epidermis of the scalp, but in Acrania the desmocranium remains a membranous coverage. Therefore, the migration of mesenchmal tissue under the calvarium ectoderm does not happen; leading to an absence of the calvarial dermal bones of the skull, related musculature, and dura mater. The brain may still develop, but without the walls of the cranium shaping it, it will not differentiate between the two hemispheres and morph into a single mass that will not be able to sustain life. A developing baby is said to suffer from Acrania if it meets the following criteria: having a perfectly normal facial bone, a normal cervical column but without the fetal skull, and a volume of brain tissue equivalent to at least one third of the normal brain size. When only the brainstem was detected, the anomaly was referred to as Anencephaly.
Many of Karinne's family and friends and many who I've met online during this journey will be surprised to see the diagnosis name of "Acrania" rather than "Anencephaly". This is because at the time we decided to open up to our community, I was not ready to share the exact name of Karinne's anomaly. In the days after we were first given the devastating news, I searched the internet as much as I could for information about acrania. All I could find were medical descriptions that were over my head (similar to the definition above) and the most horrible of horrible photographs. I later realized these were photos of babies that had unfortunately been aborted. I SO BADLY did not want my family, friends, community, and students - who we were about to open up to - to see those images and imagine our precious Karinne that way!
My first intention was to just tell people that Karinne had a rare congenital disorder that would likely take her life and not give any actual name to her diagnosis. I was SO protective of what people might think about her. Through a very thought-provoking conversation with my oldest sister, I came to the realization that sharing the name of her anomaly, or at least one similar to it, would be the best way for people to understand what was happening. And it would also serve to help others, particularly any of my high school students, who may someday find themselves in a similar situation to think back - "if Mrs. Larshus could make it through that, with God's grace, so could I."
My first intention was to just tell people that Karinne had a rare congenital disorder that would likely take her life and not give any actual name to her diagnosis. I was SO protective of what people might think about her. Through a very thought-provoking conversation with my oldest sister, I came to the realization that sharing the name of her anomaly, or at least one similar to it, would be the best way for people to understand what was happening. And it would also serve to help others, particularly any of my high school students, who may someday find themselves in a similar situation to think back - "if Mrs. Larshus could make it through that, with God's grace, so could I."
I had by that time joined the web forum called Anencephaly Blessings From Above - a group of moms (& dads) who lovingly chose to carry to term their babies who had been given the diagnosis of anencephaly. I had also found countless beautiful websites created by families in tribute to their babies taken by anencephaly. Because of this, and because of its similarity to acrania, I chose when we went public with our sad news to share that Karinne had a rare form of anencephaly.
Now - after the birth and loss of our daughter - I feel it is my responsibility to share her true diagnosis. It is also the best and most truthful way to honor her memory. It is my hope and prayer that other families who are given the devastating news of an acrania diagnosis will be able to find Karinne's webpage and feel a glimmer of hope in the sea of agonizing information on the web. Carrying Karinne for 35 1/2 weeks - loving her with all of our hearts - making the very most of each moment of her life that God blessed us with - and finally holding her in our arms and seeing her special beauty - was COMPLETELY worth ALL of the heartache and tears of this difficult journey. I pray that perhaps by viewing Karinne's website, other families might find the courage and inspiration to choose to walk this same journey and to be able to hold their precious little one in their arms, even if only for a moment.
