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48 Days — Rare Disease

Trisomy 13

By Sierra GunnellsPublished 7 years ago 3 min read
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Justice MaeLynn~ Fight for Justice!

No one ever thinks they will lose a child. When it does happen, no one ever thinks it will be to a rare disease or condition.

From the very beginning, the moment I found out I was pregnant, I just knew that this time it had to be a girl. I took an early blood test just to find out the gender. Little did I know my entire world was gonna be rocked to the core just 7 days later.

Trisomy 13, I had no knowledge of what this was. I was planning a funeral before my daughter was even born. At 9 weeks I was told I was having a little girl but she more than likely would not survive the pregnancy. From then on all I ever heard from any dr was "incompatible with life," "abort," "won't thrive," etc. I finally found a team of people who I was lead to believe would help my daughter.

I was told my sweet daughter had full trisomy 13. A rare genetic disorder that can cause organ defects, severe intellectual disability, and physical defects. For the longest time all we were told she had was rocker bottom feet, a small amount of fluid in her kidneys, spina bifida, and that she was measuring small. Towards the end of my pregnancy she developed a minor heart defect, which by doctor's standards put my daughter in the lower spectrum of problems.

My daughter was already beating odds. Making it through the pregnancy. On December 23rd Justice was born. Crying and breathing on her own! We had her transferred to Riley children's hospital in Indianapolis. At 2 days old she had an omphalocele repair. At 3 days old she had her spine repaired. She generally had a high heart rate and issues cycling out carbon dioxide from her blood. Other than the obvious issues though, you'd never know she had any problems.

Doctors don't believe in saving our medically fragile children and I saw that first-hand. I fought every day along side of my daughter. I lived day in and day out with her at the hospital. Not going home for 2 months. I have 2 other children who got to meet their sister; love on her and give her gifts. To this day they still recognize her from her many pictures.

On February 9th 2017 we (her father and I) had to make the gut wrenching decision to let our baby girl go. We were blessed to have an awesome team that day. Pictures and memorabilia were made for us.

I can't even begin to describe the feelings I had that day. Numb. Scared. Grieving before she was even gone. I held my baby girl in my arms, we dressed her in a beautiful dress, and we said our final goodbyes. I held her so very tightly as they pulled that horrid breathing tube out one last time. The feeling I got as she struggles to take her last two breaths, as her heart beat less and less. All we could do was cry and scream for what seemed like an eternity.

My daughter went peacefully. No pain. No suffering. She was at peace now. 48 days I lived the unknown. 48 days of hating doctors. 48 days of hating the diagnosis. But most of all, 48 days of hating Trisomy 13. This condition took away my only daughter. My other children's baby sister. My world and my life. All doctors tell you is what they know from many, many years ago. They go by the text book. Our children are not text book cases. They are each individuals. All of these children have personalities of their own. These children are heroes. In 48 days I learned how to love harder. I learned patience and how to be kinder. I also learned how to forgive but to never let go. In a way, Trisomy 13 saved me even though it took away my child. I've met many people in situations just like mine.

I hope one day doctors will learn that not all Trisomy cases are identical. And I hope that my daughter's story will help others realize that just because theirs a diagnosis, and just because doctors tell you something, does not mean it's always true.

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