Kaitlin Mary

February 22, 2011 is a day I will never forget, it was the day that I first heard the word Anencephaly.

It's a word that I could have gone my whole life without hearing. It is the diagnosis that was supposed to take my beautiful baby from me.

I was 18 weeks pregnant, excited to find out if I was carrying a girl or boy. My husband and I watched the screen, the ultrasound tech said we were having a girl. We were so excited, we already had her name picked out, nickname included, Kaitlin Mary but we would call her Katie.

After the tech was finished, she called my doctor in. He looked Katie over and left the room. We were then told to go back to an exam room. After a few minutes my doctor came in, tears in his eyes and said the one word we never knew and the word that would change our lives. Anencephaly. We were told that our beautiful daughter, the one that we had just seen on the screen, the one that was so alive and moving inside of me, would die.

We were sent to see a specialist, who confirmed the diagnosis. He recommended that I terminate and was very surprised that I said no and that I would carry my daughter for as long as possible, but not being my actual doctor he didn't encourage me to change my mind.

Katie also had a few other minor birth defects, this is very common in babies with anencephaly, such as a cleft palate, one eye lid that did not form completely therefore not opening, and her left ear canal did not open, all this lead the fetal specialist to say that Katie should be terminated.

Anencephaly... we were told that it was always 100% "incompatible with life" and not only would our daughter die, but it would most likely be before she was born. We were told that if she was born alive that she would only live a few minutes to a few hours. We were told that she would not see, hear, feel, or cry but most importantly... she would never know us and how much we loved her.

As a mother, I could deal with the birth defects. I could deal with most anything, but for my daughter to not know me or how much I loved her that was almost as hard to deal with as saying "goodbye" to her.

July 13, 2011 came before we knew it. We had planned for Katie's birth and for her death. Our family surrounded us, all waiting hopefully to be able to say hello before they said goodbye.

But Katie didn't do what they said. She cried right after birth. Then she surprised everyone when she was alive and moving. Our family said hello and we waited to see what she would do next. She lived and moved, very much like the tiny newborn she was, she weighted only 4lbs 1oz even though I carried full term.

We were sent home the next day to wait and "make memories". As the days went by, Katie defied all the odds and did everything that the doctors had told us she would never do. Not only did she cry, though very rarely, she could see, hear, and feel. She would search with her one beautiful blue eye for me, her daddy, and her sister when she heard our voices. She would startle when there was a sudden loud noise, whether it was from a toy her sister was playing with or laugher. She was not supposed to feel but she loved being held and hated being put down. She was supposed to be unconscious but she was far from what she was "supposed to be." When she was four months old we started adding cereal to her formula. She loved it, and after a while we moved her up to eating it out of a bowl and loved it even more. The fun really began when we started introducing other foods. She loved her apple sauce and would get mad at me if I didn't feed her fast enough but when I introduced peas she would close her mouth and wouldn't open it until I cleaned off the spoon and put apples back on.

Even though she wasn't supposed to be like a "normal" baby, she was. She had things she liked and things that she didn't like at all. She would even get mad at my mother when she tried to leave, she would ball her fists up, curl her legs up, and let out little "yells" until my mother would pick her up and cuddle her for a little while longer. She would make faces at me if I did something she didn't like and smile when she was happy. She even learned to wave "bye-bye." All the things that she was "supposed" to do, she didn't do any of them.

The day Katie died, was by far the worst day of my life. It meant that she wouldn't keep doing all the things she wasn't "supposed" to do. Even the cause of her death wasn't what would be expected, she didn't die because of the anencephaly, she died of a respiratory infection.

On April 18, 2012, 9 months 5 days after birth, Katie died.

She's proof that a baby with anencephaly can live, and can do things that they aren't "supposed" to do.

Last updated July 8, 2019