My name is A’miya Elise Wright! I’m from Greenville, SC and I was born March 6, 2021. I have the strength of a phenomenal being! At the gestational age of 20 weeks, my mommy and daddy found out that I had Trisomy 18 and doctors counted me out ever since. My mommy was extremely sick due to massive amniotic fluid buildup and couldn’t carry me to term. I was born at 35 weeks gestational age and from there, I fought hard to show the doctors all the things I would be able to overcome. I was diagnosed with Trisomy 18, anemia, chronic lung disease, congenital heart disease (bicuspid aortic valve, pulmonic valve stenosis [congenital], VSD [muscular], PFO never closed and still had some blood flow in both directions intermittently, Dandy-Walker Malformation and fetal growth retardation, Larngomalacia, because of this, I would not be able to feed by mouth. I also had Gastroesophageal Reflux and Obstructive Sleep Apnea. Doctors repeatedly told my mommy I would not make it. April 6, 2021, a month old, I was flown to Charleston to receive a catheterized balloon procedure to place a balloon inside my aortic valve to open it so blood could flow from my heart to my lungs. It was a success! For months after I would fight a hard fight to overcome severe respiratory issues. Doctors told my parents that in order for me to survive I would need a tracheotomy and be placed on a ventilator, my mommy declined. My mommy is my biggest advocate and she told those doctors that if it was nothing else that they could do to help better my life, then to send me home so she can show them what she can do to save my life! At 4 months I was sent home to “spend time” with my family before I passed away. 3 weeks after being home, I was rushed back to the hospital for respiratory issues, only to find out that I had severe secretion buildup inside my lungs which was causing me serious issues with breathing. They told my parents there was no hope for me and it was nothing else that they could do for me. My parents took me home and loved me to the purest of their being and treated me just as they would treat any of their children. I flourished, I blossomed, I grew! Medical staff could not believe their eyes. They kept telling my mommy that they didn’t understand how I was surviving or growing so wonderfully. December 2021, I was admitted into the PICU to receive a gtube procedure so I could no longer feed by ng tubing. It was a success but I was extremely sick with mucus buildup inside my lungs again and I had to be incubated and because of my floppy airway, doctors continued to count me out! The same doctors that told my mommy that it was nothing else that they could do for me at 4 months old are the same set of doctors I would see at 9 months old. Once they saw how big I had grown and all the obstacles I was overcoming they told my parents that it was more that they could do for me so I could have a better chance at life. While in the PICU, I got a sleep study done for my sleep apnea and was sent home with more equipment for respiratory support. Once discharged, my parents would take me back home and continue to love and take care of me full time with the help of no nurse or aide. I continued to flourish, grow and overcome. Every time I see the cardiologist, the pulmonologist, the sleep doctor and my pediatrician, they’re astounded about the obstacles I’m overcoming. My Pediatrician has been working with children diagnosed with Trisomy 18 for 38 years and he always tells my parents that I’m the best looking Trisomy 18 baby he has ever seen. I am now 16 months old, my height and weight are in the 60th percentile and I am finally able to breathe without oxygen when I’m awake. I have some developmental delays from not having any physical or occupational therapy but overall I’m beating all the odds that were stacked against me!
Fighting w/Strength
