Makayla's Story

Diagnosis: Anencephaly

By Makayla's Mother

I remember the day too vividly, the dreaded phone call from my doctor on March 4 2011. I was in shock, couldn't ask questions...I just kept replying OK to her when she said "Your blood work came back bad, high AFP, you need to go see the genetic specialist." This was the day that changed my life. I researched and researched for the next 4 days while waiting for my ultrasound on Tuesday. I finally had an answer to why my AFP was so high "I know it, my dates are off and im further along then they think."

Here I was at the ultrasound, asking the tech to tell me if we were having a girl or boy and if I could hear the heartbeat. The entire time she didn't speak a word, and left 2 times to consult with the radiologist. The last time she left, I sat up to take a look at the pictures of my baby...there she was, sucking her thumb, but I could see all too clearly that something was wrong with her head.

My husband was never allowed to come in, she sent us right up to the genetics specialist. As soon as the doctor came in, I immediately said "I know my baby has anencephaly, I saw the pictures of the ultrasound." My world came crashing down when she confirmed my suspicions.

My husband and I broke down, and just wanted to leave the office to think of what we were going to do. We had to make the heartbreaking choice to be induced at 19 weeks because I could not bear the thought of letting my baby girl suffer through 5 more months, only to pass away when she was born. They say she could not feel pain, but do they truly know? I couldn't go on everyday in life thinking if this was the day that my baby girl was going to pass away.

Now it's only been 1 week since we said goodbye to my baby girl Makayla, and I feel like I'm losing my mind. Sometimes I think I still feel her inside of me, kicking...and then I realize its a memory of her short 5 months of life inside her mom. I wish I could have protected her more, or done something sooner to prevent this, but I know it was just one of those things that God gave me and one day I will know why. He doesn't give people things that they can't handle, and although I feel like I'm slowly letting go of life, I know I have to be strong for my 1 year old son. I dread the day that I have to return to work as I am a maternity nurse. Will I be OK to ever go back? That I am not sure, but I try to convince myself that this experience will make me a better maternity nurse in the future.

I have experienced the life of my 1 year old and have experienced the grief of losing a child, and therefore I feel like I will be able to relate to any mothers coming in to deliver their babies. I cry everyday as I picture my baby girl in my hands as I said goodbye one last time.

She was perfect and beautiful, despite missing part of her skull, but that's what made her unique. I miss her everyday, mommy, daddy and your big brother Jeremy will always love you and never forget you. You are at peace now and I am never saying goodbye, but see you later.


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