Sunday, February 19, 2017

Our Story

As most of you know we are currently expecting our third baby, and we are ever so lucky that it is a girl! I am not one to blast on social media our babies name until they decide to come into the world, but this brings a different circumstance. We have decided long before we found out the gender that if it would be a girl we would give her the name Eva Carolyn. Eva, after my maternal great-grandma (whom I am also named after (Eva May)). Carolyn after TJ's maternal grandma Carol Ann (with her permission and blessing we have combined the first and middle name to have Carolyn). We were so thrilled when we went to the ultrasound place to confirm our intuition that this baby was indeed a girl!

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 brainskull, and scalp that occurs during embryonic development.[1] 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.[2] 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,[3] 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.[4] With very few exceptions,[5][6] 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."[4]
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.

Thank you

TJ and Sadee Carney


  1. No words are adequate. We will have you in our prayers. I'm here to talk if/when you need.

    1. I'm so sorry. As Rachel said, you are in our hearts and prayers.

  2. We are thinking and praying for you and your family ❤

  3. I'm so very sorry to hear this news. I have a dear friend whose first born child was also born with anencephaly. His name is Curtis and he only lived an hour after his birth. The pain and sense of loss is enormous. I will pray for your broken hearts to be healed, and for you to feel the peace that only our Heavenly Father can grant you.

  4. I don't know if there is a support forum there for you but I know that on Utah kids there are a couple of Mom's that have babies diagnosed with this. Please know that you guys are in my prayers. I know that Heavenly Father gave you this amazing child to rear. It is not an easy road but in the end is so worth it with this baby girl being a Celestial being. We love you and if you ever need to talk I'm a phone call or text away!

  5. I'm so sorry for the heartbreak you guys are going through. My thoughts and prayers and with you and your family. ❤️❤️

  6. Perfect spirit though, and I'm sure beautiful baby to you. She may know of what is happening. She can hear your voices and perhaps is bonding with you, remembering your voice. Heaven is aware as well. Heartbroken for you. Will pray for peace and understanding for you; her family.

  7. I have no words, my sweet friend. What a beautiful gift you are to sweet Eva for giving her the gift of life, no matter how short. Our thoughts and prayers will be with you always. *hugs*

  8. I am so sorry for you guys to have this news :( I cannot imagine what you are feeling. You and your whole family will be in my thoughts and prayers and if I may I'd like to pass this along to my church as well. I know the time that you will share with sweet Eva will be precious. I pray that it will be more than enough time for all of you. Science only goes so far and then comes God and I have witnessed this in different situations <3 I will keep you all in my prayers for peace and comfort <3

  9. I'm so sorry! Your family will be in our prayers!

  10. Still thinking about you and your cute family, Sadee. We love and miss you. And you are still in our prayers!