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Caring for a Child with Special Needs: Meet Aubriana

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist
01/26/16  10:36 AM PST
atrofia muscular espinal

Shellie L. knows true love when she looks into her daughter’s eyes each morning. Finding out her daughter had a severe form of spinal muscular atrophy was a devastating blow but each day with Aubriana is a blessing that makes her appreciate life.

I was 23-years-old when I had my daughter Aubriana. She was my second child and I had just graduated from LVN (licensed vocational nurse) school one month before she was born. My pregnancy went wonderful, and on Sept 22, 2008 Aubriana was born. All tests during my pregnancy and newborn screenings came back perfect. She came into this world and I was so in love with her.

At just 10 weeks old, we brought her into the ER because of a high fever. I could not believe when the doctor came in and told me that she had pneumonia and was being admitted to the hospital. I was devastated. They told us it was community-acquired and not to worry if she was a little behind on her milestones because she spent almost a week in the hospital.

At her four month visit, her pediatrician said something was seriously wrong. She was not holding up her head and was very floppy. She referred us to a neurologist and told us to see them right away. My heart broke; I couldn’t imagine what could possibly be wrong with my perfect baby girl. We scheduled the appointment and researched all the possible things that could be wrong. Before we were able to be seen, we rushed her back into the ER again because she was having low oxygen numbers. This time, the hospital knew it was something more serious. They called in a neurologist immediately and he muttered the words, Spinal Muscular Atrophy. I had no idea what this was and I was terrified.

They ran all the necessary blood work and within a week they gave my baby the official diagnosis of Spinal Muscular Atrophy Type 1. They gave us no hope.

They told us to take her home and love her, that most don’t make it past the age of two. It was the worst day of my life. We cried, begged and prayed to God to heal her. We kept being told she was a blessing to our lives. We didn’t want “the blessing,” we wanted her healthy and to live a long life. Time went on and the disease progressed. In a type 1 baby the disease progresses very rapidly. It is like the baby form of ALS. At only seven months old, my baby was now eating by only a g-tube, and needed a tracheotomy tube to breathe.

Aubriana was a fighter and always told us she wanted to fight. We never gave up because she didn’t. We decided we would start living life and appreciate each day as it comes.

When I finally brought Aubriana home I was told she would need nursing care around the clock. But being an LVN, I was able to find an agency to hire me to be her nurse. I couldn’t have received a bigger blessing. My life was forever changed.

Aubriana made me a better person and mother. I was so young to have two little girls and taking on such a tremendous task of being a mom and a nurse. Life has its challenges and I know I don’t have the easiest life but I wouldn’t change it for the world. I never truly knew the unconditional love I felt until I had my daughters. Life can be overwhelming at times but my daughter inspires me to be a better person. She has taught me to live in the moment, cherish every day and live each day like it’s our last.

Aubriana is basically paralyzed, she cannot talk and depends on me for every single thing she needs in life. But I truly feel blessed to care for her. I feel that she is a true angel on earth that is teaching me what really matters in life. Because of her, her big sister gets a better, more patient and loving mother.

My daughters are my world and I never thought I would have the life I do but life is unexpected. I never imagined I would have a disabled child but I am honored to be the mother of such an incredible human being. When you look into her eyes you see pure love. She is so innocent and can do no wrong. Waking up each morning I cannot wait to see her face and get her ready to start the day. Caregiving isn’t easy but it’s truly the best job in the whole world. My daughter is not a burden, she has made my life a better world and has taught me the definition of LOVE.