Now, as happy and excited we are to be having another baby and another girl; we are also very heartbroken to share this news. We have been advised by our doctors to share this information with others so we can start the grieving process. I have found my outlet is writing and hence the reason for this blog.
It is with a sad heart that we tell you:
Eva has anencephaly. This is also a severe form of spina bifida. Basically what we know is something happened during the early stages of pregnancy that caused her brain to not fully develop. Her brain along with her skull have formed but not correctly. With this information and nothing to do to fix it- our sweet Eva is not going to live for more than a few hours if we are lucky
There are other issues that we have found with meeting with specialists that confirm this diagnosis among others. At this point it doesn't matter to me what else is 'wrong' with Eva; because at the end of the day nothing else matters. We will be saying goodbye to our baby.
I will leave with a brief description of what Anencephaly is. I ask if you are to google just read the information and skip looking at what google posts for images, they always put the worst up.
Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during embryonic development. It is a cephalic disorder that results from a neural tube defect that occurs when the rostral (head) end of the neural tube fails to close, usually between the 23rd and 26th day following conception. Strictly speaking, the Greek term translates as "no in-head" (that is, totally lacking the inside part of the head, i.e. the brain), but it is accepted that children born with this disorder usually only lack a telencephalon, the largest part of the brain consisting mainly of the cerebral hemispheres, including the neocortex, which is responsible for cognition. The remaining structure is usually covered only by a thin layer of membrane— skin, bone, meninges, etc. are all lacking. With very few exceptions, infants with this disorder do not survive longer than a few hours or possibly days after their birth.
The National Institute of Neurological Disorders and Stroke (NINDS) describes the presentation of this condition as follows: "A baby born with anencephaly is usually blind, deaf, unaware of its surroundings and unable to feel pain. Although some individuals with anencephaly may be born with a main brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining awareness of their surroundings. Reflex actions such as breathing and responses to sound or touch may occur."
The cause of anencephaly is disputed.
At this time we are still processing the hard news, and we do not have answers- all we know is we are going to have to endure the hardest thing we have had to go through. With this being said, we would appreciate the love and support and prayers (if that is your gig) and good thoughts as we are figuring out what our next steps will be. I will continue to update this blog with our story, thoughts, feelings and how we are doing.
Though Eva's life will be short here on Earth, she will always be in our hearts.
Once again, we thank you for your thoughts, prayers, support and love. We will need them in these hard weeks, months, and years to come.
TJ and Sadee Carney