Riley’s Story

Site created on July 10, 2018

Riley was born on September 13, 2017. She was diagnosed with multiple birth anomalies. I found out about her problems when I was 5 months pregnant. I had my ultrasound in May and the following day, the doctor had told me Riley had some health issues. She pointed on the ultrasound images where Riley had cleft lip and palate. Not only that, but there was something wrong with Riley's heart. My doctor then referred me to a specialist at Children's Hospital in Minneapolis, Minnesota. I was heart broken; I came home and laid next to my husband and started crying. One day I thought I was having a healthy baby, then next thing I know, she was not at all healthy. Two weeks later, I went to the appointment and found out that Riley had a double out right ventricle (pulmonary arties and aorta comes out of the bottom right chamber) and ventricle septal defect (Hole in the septum).  Every week I went in for a check up just to make sure Riley's heart was stable  and as she grew bigger in my stomach, they found more problems. She had sever micrognathia (small chin), which can result in her having a hard time breathing, tube fed and trached. They also mentioned that all of her limbs were a couple weeks behind, but one of her femur was growing a lot slower than the other, meaning she will have different leg lengths. I decided to do a genetic testing to explain why this was all happening to her, but the results came back with nothing. I was given the option to continue my pregnancy or to terminate. This was my first child, I could already feel her moving inside me, I couldn't give up on her because I knew she was strong. 

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