Anencephaly — The Story of Faith
I knew about this story while analyzing some cases of anencephaly for my Neuropsychology class at the university. The story is about a young pregnant woman that heard a word that nobody wants to here while being pregnant — Anencephaly. This is her story…
When she was 19 weeks pregnant, she was told that her baby didn’t have brain. This condition is known as anencephaly. She was told that her baby was only alive because the baby girl was attached to her, but that she could not survive on her own. The doctor told her that she could safely continue the pregnancy, but that her baby would die shortly after birth. Or, she could also decide to terminate the pregnancy at that time, inducing labor at 20 weeks and letting her baby die without ever seeing her, or holding her in her arms.
“I didn’t have to think about it for a second. I knew there was nothing to be gained by terminating the pregnancy and my daughter was already the person I loved the most in the world. Even if I remained unconscious, as the doctors had told me, and only if she lived for a few seconds or minutes, it was worth it” — She thought.
So she began her odyssey… This brave mom started writing a journal about her baby and how she was doing on her first days of life…
“Today, as I write this, Faith is 10 weeks old and she is doing great. She is fully aware and responds like any “normal” baby. She is very sensitive to touch (especially when something is cold) and there is no doubt that she can hear. She smiles, makes little noises when she’s happy, cries, and is a brave child. She knows what she likes and what she doesn’t, and she lets you know!. She has her own little personality that we love. We have been amazed by her development… From the first day, she smiled and said baby things (“boo”, “gu”, “bua”… so cute!). From the time she was born, she could lift her head up and when she sat down, when she was only 5 days old, she blew our minds!” — The young mom said.
Since Faith was clearly conscious and doing very well, she had a Computed Tomography (CT) scan to confirm the diagnosis. A neurosurgeon and radiologist reviewed the images and agreed that, incredibly, Faith does have anencephaly, the initial diagnosis was confirmed. They didn’t know how to explain that Faith was alive and breathing, and even more! that she also acted consciously!
“I hope that by sharing our story, we can shed some light on this disease called anencephaly, and let the parents know that there is more hope and joy for them, by giving a chance to their babies from what they could have ever imagined. I know this from experience! They can read all the books and medical journals they want, but this is REAL life. And this is real love!” — Faith’s mom shared.
Unfortunately, and as expected (sooner or later), Faith died at 93 days old, and this is how the mother describe this timeframe:
“The best 93 days of my life were spent with my daughter. We spent the whole morning and part of the afternoon cuddling in my bed. I told her I loved her many times. I held her in my arms when she died. It was around the 4:40 p.m. I had just changed her diaper and decided to take her and wrap her in a blanket. She smiled very sweetly and kept doing so for several seconds… I thought she was very cute. I waited for her to breathe again, but she didn’t. She looked at me, opening her beautiful eyes, and I realized what was going on. I told her that I loved her, and that everything was okay, I hugged her and cried over her.”
I am beyond impressed with this story, how was it possible that this little angel stayed alive for over 3 months? her mom gave her the chance to live, her mom loved her no matter what! I belive it was her mom’s love and hope what kept the light of this little girl shinning bright. Sometimes, the science does not have the answers… the answers are somewhere else.
Thanks for reading!
Source:
Zurcheva (2009). Faith, un bebé con anencefalia. Reviewed from: https://zurcheva.wordpress.com/2009/06/23/faith-un-bebe-con-anencefalia/