“My now-husband, Chayd, and I were high school sweethearts who had just graduated together the year before. We were young, in love, and set to start our lives together. In January of 2012, we went away on a trip to Hamilton Island for my mother’s birthday. It was then I started to have these weird, I guess you could say, motherly instincts I may be pregnant. I was late and not feeling great, so the thought had crossed my mind. Only 17, I was scared so I kept these feelings to myself until I got a pregnancy test when we arrived home. I was right. I was, in fact, pregnant.
I remember sitting on the toilet, looking at that stick, thinking, ‘How am I going to tell Chayd?’ I walked into the room and placed the stick down on the bed. He looked at the stick, looked at me, and said, ‘Nah,’ with a smile on his face. ‘It’s probably a false negative. Don’t worry, it’ll be fine.’ I told him we needed to go to the doctor to get a test to confirm the pregnancy. You see, since we were so young, I was getting all my advice from good old Dr. Google, who told me I needed to go to the doctor. Right then and there, we went to the doctors. We peed on another stick and the doctor congratulated us after seeing the instant results.
Courtesy of Hailey Brown
When Chayd and I got back in the car, I said to him, ‘Can you believe the doctor just congratulated two 17-year-olds for being pregnant?’ We both were in shock still and didn’t really know what to do from there, but we agreed we wouldn’t tell anyone until we both felt ready. Around 12-weeks, we told family and friends. Some were okay with the news, other were disappointed and angry at us. Regardless of their opinions, this baby was ours and we were going to love it and raise it to the best of our ability. Our pregnancy was textbook, and Chayd had managed to land a full-time job, while I was working part-time.
Courtesy of Hailey Brown
Fast forward to the night of August 27, 2012, when I was 35 weeks pregnant. My water broke prematurely and just like that, we were off to the hospital to give birth. My parents and brother came up with us, and I was so grateful to have their support. 8 hours later at 7:52 a.m., our baby girl, Arliyah, was born at just 4.9 pounds. The amount of love I instantly had for her was indescribable. I remember as they passed her to me, I sobbed to Chayd, ‘I love her, I just love her so much.’ I held her in my arms, looking at her incredible locks of white hair. I thought to myself, ‘She’s just like her daddy.’ Chayd and I had super blonde hair as young kids so it wasn’t a shock for me to see how white Arliyah’s hair was. As all the doctors and nurses started coming in to check her, I started panicking, thinking they would have to take her away from me to the NICU. They let us hold her for a few hours and then they did have to take her away. That moment was, back then, the hardest thing I had to do, watching them take my baby girl away from me. Little did I know that was only the beginning of our journey.
Courtesy of Hailey Brown
Chayd called his family, who lived about 4 hours away, and they started to make the trip to us. Meanwhile, I had a shower, freshened up, and couldn’t wait to get to the NICU to see my baby. Chayd helped me walk down those hallways, which I remember vividly. As I walked into the small room, I saw my sweet little girl dressed and wrapped up in a little blanket with tubes in her nose and off her arms. I ran over to her and picked her up immediately, and I didn’t let her go until it was time for the nurses to talk to us about what the plans were with her stay in the NICU.
A couple of days passed. Chayd had gone back to work so it was mainly me and my mom coming and going. One morning, I went around 5 a.m. by myself to be there for her morning feed. She was doing really well, despite being so small. One of the nurses came in and sat next to me as I tried to breastfeed Arliyah. She asked me if I had ever heard of the world albinism. I looked at her and said, ‘Nope.’ She said, ‘What about albino?’ I replied in a joking manner, ‘Everyone in high school used to joke Chayd and I were so fair, we would have an albino baby.’ She grabbed my hand and said, ‘I think your baby may be albino. We want to put a cover above her cot, as we think the lights are hurting her eyes.’ I didn’t really think too much into it. I was mentally and physically exhausted. I went home that night and told my parents and Chayd what the nurse had said about Arliyah. Right away, they all went into overdrive googling. I remember crying and yelling at them to stop because my baby was fine. There was nothing wrong with her and I didn’t want to hear about this albinism because she didn’t have it.
Courtesy of Hailey Brown
The next day, my mom came to the hospital with me and the ophthalmologist met us. I couldn’t be in the room while they held her tiny eyes open with these metal prongs. I heard her screaming from down the corridor. When she stopped, I walked back into her room and picked her up. I knew in that second something was wrong by the way the ophthalmologist looked at me. He said, ‘I’m sorry to tell you this, Hailey, but your little girl is blind. She is an albino. She can’t go outside in the sun. You need to contact vision services and maybe move somewhere not so hot.’ And then he walked out. I fell to the chair, holding my beautiful baby girl and sobbing. My mom comforted me, and I will never forget the look of pain and sadness in her eyes that day. That afternoon, we left the NICU knowing very little. We headed to Chayd’s work, where I met him outside and told him the news. He hugged me and said ever so gently, ‘She’s not blind. She is going to be just fine, I promise.’
Courtesy of Hailey Brown
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