Courtney Sugahara
My name is Courtney Sugahara but my friends call me Coco. I’m a mother of two beautiful girls, Geri (4 years old) and Lili (6 years old), who is also a part of this special club that I like to call Up Syndrome. We live in sunny Southern California in the city of Costa Mesa.
When my husband, Brelan, and I got married in May of 2014, we decided to try and get pregnant. After many tries (lol), different tests, fertility meds, and a miscarriage, we finally got pregnant with our Lili three years later in May of 2017. At my 10-week appointment, my doctor proposed a blood test, since I was 35 and over, that tested for chromosomal abnormalities. I was hesitant on doing it but felt the pressure to do it so I did it. I will never forget the call a few days later that I thought would change my life forever. The doctor told me it was very likely that my baby would have Down syndrome. I was shocked, and so many thoughts were going through my mind, like “Why me?” This was my first child, and I couldn’t believe this was happening to us.
We decided we wanted to know for sure because we didn’t want the feeling of wondering and wanted to be fully prepared, so we moved forward with an amniocentesis to confirm our diagnosis, which it obviously did. There was no question of termination. This was our baby and she was meant for us.
A few days later, we decided to let all of our friends and family know our diagnosis. The support was overwhelming and something I won’t ever forget. After we had announced that our baby had Down syndrome, we had our gender reveal to find out what we were having. To my total shock, we found out we were having a baby girl, our Lili. I always dreamed of a baby girl and I knew if I did ever have a girl, her name would be Lili.
The day after having such a great day of celebrating our baby girl and her diagnosis, we got some scary news. Our baby girl had a complex heart defect and would possibly need surgery right after birth. All my concerns about her having Down syndrome were completely out the door, as I was more concerned about her heart.
When I was around 29 weeks pregnant, I was put on moderate bed rest and told that Lili wasn’t growing at the rate she should be. I was told there was a possibility she may not make it if she was delivered now, and she possibly wouldn’t make it even if she was still growing inside of me. It was the scariest time, but I remained positive. At 34 weeks it was clear that she was not thriving inside and the doctor told me to go to the hospital. On December 13, 2017, at 3:00 p.m., our Lili was born weighing a tiny 2lbs 14oz. As small as she was, she came out breathing on her own and had an APGAR score of 9. She spent the first 30 days of her life in the NICU. I will never forget the feeling when we finally got to bring her home. Our baby was here and she was doing great!
It turned out Lili didn’t need heart surgery right away. She did have a cardiac catheterization procedure at 8 months old, and then at 11 months she did end up having open heart surgery. But she got through it and is doing great! Moral of the story is, our Lili is a fighter and I’m so damn proud to be her mom. I will fight for her and her needs for the rest of my life.
This is my fifth year on the Pledge Committee with Ruby’s Rainbow! The last three years, we’ve hit our goal and were able to award scholarships in Lili’s name, and we want to do it again this year! I think this organization is amazing, and I love that it helps adults with Down syndrome to have that opportunity to go to college, and gives them the assistance to make that dream possible. One day, if Lili wants to, I would love for her to be able to go to college or do whatever she dreams of. I want her to know that anything is possible and she is able!
