Aliyana Grace’s Story

As told by her mother, Tara.

March 13, 2012 at 19 weeks, I went in for an ultrasound and our baby girl’s heart rate was in the 70s.  Aliyana Grace had complete heart block: a rare heart condition where the electrical system is disrupted and the atrial and ventricles do not communicate, which causes a dangerously low heart rate.

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I was at NYU the next day for a fetal echo and her heart rate was in the 50s.  I was started on steroids, plaquenil, and ivig treatments.  We were told she would not make it.

We did not give up, however, and I was determined to fight as hard as I could, as long as she kept fighting with me.  We fought until I went in for a regular ultrasound at 34 ½ weeks and found out I had no fluid.  That night, June 19, 2012, at 9:30pm our beautiful girl was born.

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She was immediately taken from us and the next day had surgery for a temporary pacemaker.  She did great in the hospital and was a favorite in the CICU.  She had such a big personality for such a tiny 4lb 13oz baby.  At one month old, I finally got to hold my beautiful girl. I remember them placing her in my arms, moving all the wires and tubes so we could be comfortable. In that moment my heart was complete, I dreamt of that moment for so long, and I knew I could never let her go.

She was scheduled for her permanent pacemaker surgery. I was so excited because I knew this meant she would be coming home shortly after.  God had different plans though. Her lung collapsed after surgery and it was just too much, she passed away a week later at 5 weeks old.

Those 5 weeks were the most amazing weeks of my life. I miss her every single day, but I hold on knowing that I will see her again.

In 2014 she became a big sister. Her sister points to her pictures and says “sissy”. I know Aliyana chose her and watches over her. There is not one day that I don’t think of her.

“They say that time in Heaven is compared to the “blink of an eye” for us here on this earth. Sometimes it helps me to think of my daughter running ahead of me through a beautiful field of wildflowers and butterflies. So happy and completely caught up in what she is doing, that by the time she turns around to see if I’m behind her…..I will be.”

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