What is something unique and special about your child with trisomy that you wish more people knew?

When I had my ultrasound and they saw soft markers for Trisomy 18 I got scared and hesitant to get genetic testing done. But with further ultrasound along my pregnancy. They saw more concerns about my daughter’s anatomical findings. I agreed to have amniocentesis done and they confirmed the Full trisomy 18 diagnosis. We were devastated when we had a meeting my neonatal team because it was indicated that I might have a miscarriage, still birth or live birth with a short life span. I still continue with my pregnancy and trust and hope for God’s miracle. We were thankful that Nina came out alive, beautiful and we felt her love. We were able to bring her home but she became sick and went back to the hospital after a few days. She fought but her condition deteriorated and lived 4weeks.

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?

I think it’s important to create awareness for Trisomy 18 because I experienced that doctors still considers Trisomy 18 as a fatal diagnosis. They expected my daughter to not live long and they were just waiting for her die when she was intubated. They didn’t consider thinking beyond what they could do for her to live longer. She didn’t qualify for a heart surgery, no referral to a pulmonologist, and others. It felt like my daughter already had a death sentence even though she was still alive.

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?

I hope that doctors would be more educated about Trisomy 18 and not consider it as “fatal”, a “death sentence”, “deteriorating illness”, “severe disability” and other unfair labelling. All children should be treated fairly and beyond their diagnosis.