“She is such an amazing baby and we can’t imagine life without her.”
Ali Elizabeth Hygema, Trisomy 13, 7/3/13, Warsaw, IN, USA
Our sweet daughter, Ali was born on July 3rd 2013 with Trisomy 13. Even though we had several ultrasounds, we had no idea of any problems. We expected everything to be fine, and painted a picture in our minds of how we thought our lives would be.
Ali was taken to a NICU an hour away from where I delivered her, so of course I asked my doctor to release me from the hospital right away so I could be by her side. Our minds were running wild with thoughts of awful things we had read online about Trisomy.
As soon as we got to the hospital we were greeted by the geneticist who told us to prepare for Ali’s death, she was not expected to make it home. It felt like a nightmare, we wondered how this could happen to us and why Ali. Not many people at the hospital gave us hope.
We were told she has microcephaly (causes a small head from improper brain development), and microphthalmia (abnormalities of the eye or eyes). We were told that her sight is probably restricted to light only and she will most likely be mentally handicapped. She has severe hearing loss in one ear and moderate loss in the other. Ali has a cleft palate in the soft tissue of her throat and polydactyly (an extra finger on each hand). Her heart has a bicuspid aortic valve instead of a tricuspid valve and an open PDA. She has been through several surgeries including cataract removal, PFV removal, myringotomy (ear tubes), gastrostomy (feeding tube), and omphalocele repair. She is doing very well these days after a long journey of trying to conquer seizures, the doctors have finally found a concoction of meds that works for her! She is such a ball of joy and sunshine!
We just do everything in our power to get her help and pray for the best. We are so thankful that she is still here and showing signs of hope. God has been with us every step of this journey and we couldn’t have done it without him. Research studies are good to know but we are letting Ali show us what is going to happen next. Every child is different and has a different purpose here on earth. We hope her purpose includes being here for a long time. She is such an amazing baby and we can’t imagine life without her.