On June 24, 2009, our family was blessed with the most amazing gift. It was the gift of Gabrielle “Gabby” Jane, our beautiful baby born with a terminal condition of Hydranencephaly. Although, Gabby’s life on this earth was brief she brought us something that we will cherish forever…Unconditional Love.
I go back to the days in June 2009, when Jason and I met with an intimidating amount of doctors. We were taken to a conference room in Children’s Hospital and took our seats at the table surrounded by these numerous Physicians. I sat at that table frozen as the doctors began throwing out their questions. “Are you aware of the severity of your child’s condition”, “Are you prepared to take care of a child with such great needs”, “what is your understanding of her condition”, “Are you aware that your child is going to die”, “What are your plans with DNR”. I was overwhelmed with the horrific questions, but what devastated me the most was when one doctor said the words “your daughter will live life in a vegetative state. She will never have consciousness, be aware of her surroundings, she will not know who you are, and she will never love”. My heart shattered and all I could do was cry as I thought that our child will never know who her mom and dad is, I would never know if she loved us, and that she would never be aware of how much we loved her.
When we brought Gabby home for the first time, we were terrified. Gabby was my first child. I was a brand new mom and brand new mothers are terrified, let alone one who has a medically fragile baby. She wasn’t able to regulate her temperature so she was always hypothermic. The only means of keeping her warm was through heating blankets and body heat. Her means of nutrition was through a NG feed tube and I feared aspiration and had panic attacks every time I fed her. You had the fear every morning when you awoke that she would be lifeless in her bed. I know that sounds morbid, but when you are told that your child will die within months and her death will most likely occur when she is sleeping due to her forgetting to breathe, that is a thought that is instilled in your head and you fear it.
Shortly after arriving home, Gabby had her first pediatrician appointment. Her pediatrician had been in contact with Children’s and was aware of her condition and her prognosis. I remember the first time he came into the office. He picked her up, examined her, asked me a few developmental questions that they always ask then says I can take her. As I took Gabby, he wrote notes in Gabby's file. He then sits down and asks me how I was doing. I broke down and said that I was terrified. I had no idea what I was doing. His words, I will never forget, he said “take her home and treat her like any other child”. I couldn’t believe that for once a doctor said something good. Well, that is exactly what we did. We treated Gabby like any other child, meaning we put no limitations on her.
Gabby started to excel in things. She was rolling on her side by two weeks, eating by mouth, began crying to express her needs and wants, grabbing objects, holding onto your fingers, smiling, and so much more. She was doing amazing things. The thing that amazed us the most was that she was showing love and affection. Her kisses filled us with joy and her smiles when she heard our voices brightened our days.
Gabby expressed love to those she knew the most, and that was family. Gabby, had no cortex, she was born with no brain, other than her brain stem. Gabby’s love came with no conditions. She never expected anything from anyone. She never saw the bad in people. She didn’t get mad about the mistakes I made taking care of her. Gabby’s love came with no limitations or expectations. She accomplished in her seventeen months on earth what some of us spend our lifetime trying to accomplish. She was truly an amazing child that gave us the best present, Unconditional Love.
