When we found out I was finally pregnant, just a month after getting married, we were elated, but also filled with fear. I went through a brutal miscarriage only 7 months before. My obstetrician guilt tripped me into getting genetic tests done. Not because I was at risk, I was 19, and it wouldn't matter to us either way. She wanted us to be prepared. I gave in.
After my first round of tests, I developed a strange feeling, an instinct - a sense of fear that my baby was going to have Down Syndrome. It came out of nowhere. I knew little to nothing about it, no one in my family had it, and I had never met or known anyone with Down Syndrome. Even when the doctor assured me all testing came back negative, the feeling stayed with me, and I never shared it with anyone. It wasn't until I was at the end of my pregnancy that it went away, and I never thought about it again. I was ready to meet my perfect girl and start our lives together.
On September 13th, I got an email from my obstetrician. She started off by telling me my baby is growing well and looks healthy. After that, she wrote that there was a small calcification in one of the baby's heart muscles called an Echogenic focus. She said it was a common finding, and some studies have reported an association with Down Syndrome and Echogenic focuses in the heart. I went back and read that sentence over and over and over. I was at work when I received this message, and I ran to the bathroom, trying to hold back the tears until I knew I was alone. She wrote: in my baby's case, they were waiting on the genetic tests, but the heart had formed normally, so she was at a very low risk of having Down Syndrome. I cried in bed when I got home, as my husband held me, telling me everything was going to be okay. I finally emailed back and asked when we would be able to find out for sure if our baby has Down Syndrome. Moments later, I received a call. It was a nurse calling to explain to me in better detail what was going on. "Your genetic tests all came back negative, and the obstetrician will go over the rest with you at your next appointment."
Finally, the day of the appointment slowly approached, and I was so anxious. Our first and second-trimester blood screening came back negative, her neck measured at a standard size, and there was NOT ONE marker of her having Down Syndrome. My obstetrician told me there were no issues with her heart, and it is likely to resolve in the third trimester. We were told that although the tests were negative, they are obligated to give us a "risk factor" to minimise repercussions. I was so relieved from the news, I felt like I could finally breathe.
Fast forward to my due date. It was 2 o'clock in the morning, and my waters had just broken on the toilet. I had no contractions, no leaking, so I assumed it was urine, and went back to bed. I called the nurse line that morning when I woke up and told her what happened. "It's most likely just urine from the baby shifting on your bladder." I thought it was odd that this happened for the first time, and on my due date, but still, I went about my day, but something was just not feeling right. It was 8 pm, and I decided to call the nurse back and ask if I could come in to get checked. We arrived at the hospital, and are put in a delivery room to wait for the midwife. She performed a swab test on me for amniotic fluid, and it came back negative. She then checked the fluid around the baby and noticed that it was low. She assumed I was just dehydrated and decided to give me an IV to rehydrate me. Two hours went by, and another ultrasound was done, and the fluid was still the same. She then tells me, "Well, it looks like your water did break, we are going to admit you and start the induction process."
As they started to monitor the baby and me, they noticed that her head was very low, and her heart rate was slow. Because of this, they did not want to give me Pitocin. But, I still wasn't dilating. They then decided to insert a balloon catheter inside of me for 12 hours. I thought to myself: they put it in, the balloon inflates, and the amount of time it's in there, it dilates you to a 4. Okay, how bad can this be? HA. It was worse than labour itself. The male doctor was not gentle with me either. The next 12 hours were full of agony and restlessness. Once it was out, I was in deep pain from the contractions and was unable to rest. I was made to wait until I was dilated to 7cm to administer an epidural. Once I had that, things started progressing quickly, and it was finally time to push. Labour was everything I wasn't expecting, but it was incredible how promptly I forgot it all when she arrived. After an exhausting 25 hour labour, and a few pushes, my Scarlett Rose was finally here. They immediately laid my very purple babe on my tummy facing her daddy, and as I cried the happiest tears, she was quiet. I looked at my husband, and as tears filled his eyes, I noticed a look of concern—he knew.
I remember the room being filled with nurses and chaos. Without having immediate bonding time with her, they took her from me to the warming station and huddled around her. Next thing I knew, a different doctor, whose face I'll never forget, came into the room and went straight to Scarlett. He then approached my husband and I, with the most concerned look on his face: "She's doing okay. She has a low resting heart rate, she's not breathing well, and she has a few markers on her face that look like a 'certain birth defect'." I went silent, became emotionless, and felt as if the room was now moving in slow motion. We were able to have a few moments alone with her before she was taken to the NICU. They handed her to me for the first time, and I just stared. My baby has Down Syndrome. I didn't want it to be true. I thought of every possible thing to try and convince myself it wasn't. I thought "I'm young, there is no way. The tests were negative. I don't know how to raise a baby with special needs." But there I was, holding my baby and I felt like I didn’t know and I was grieving the loss of the girl that I had been waiting nine months for. I almost felt embarrassed to tell my parents as they walked in the room, but my Mum immediately came to me and picked up her grandbaby. "She is so beautiful and so perfect." They were over the moon in love with her.
That night I had my first visit with her, and it was sweet. My husband and Dad spent time with her first, while I was getting taken care of from the delivery. My Mum and I went to visit her together shortly after. I could hear my Mum holding back her tears, as she told me how much of a blessing she is. "She's pretty awesome, Kimburli" - she would say to me. As I stared at her, hooked up to tubes and wires, it then hit me, this is my daughter, and she is perfect. Scarlett had a hole in her heart, issues with her lungs and thyroid, low platelet levels, and was on a feeding tube. Not only did she struggle with a bottle, but struggled with breastfeeding as well. Two days later, we got the final diagnosis that she had Down syndrome and also WPW (Wolf Parkinson White Syndrome).
It was day two in the NICU, and they were discharging me and only me. The drive home was full of heartbreak. Although we were only going home just to leave and go back to see her, it was one of the saddest moments of my life. I had carried this sweet life for nine months, hoping, wishing and dreaming of how perfect it was going to be when she laid her in the bassinet for the very first time. But, there I was walking into an empty house with an empty bassinet and eyes full of tears. I'm still so thankful to this day that we were provided with a hospital room to make our visits with her much easier. By day four in the NICU, Scarlett no longer needed oxygen or a feeding tube. She was breathing well on her own and was finally successful with bottle feeding. Her platelets were still being monitored as well as her heart. By day six, Scarlett was finally strong enough to go home.
Breastfeeding was always my plan. I was so excited to experience that bond that Mums always talk about. They took her so quickly to the NICU that I didn't get to nurse her. Scarlett's low muscle tone kept her from latching to me and a bottle. We worked so hard at it while I strictly pumped for four months until she learned to breastfeed. I finally felt that bond and it was so magical. It took a couple of months for me to really feel like her Mum, though. To fully accept her diagnosis. There were nights where I would cry myself to sleep and days where I had no idea what the hell I was doing or how I was going to do it.
Like any Mum, especially special needs, it's hard not to compare your child to others. Scarlett is 17 months. She just started crawling. She doesn't say words yet, doesn't walk yet, doesn't feed herself yet. So yes, she may take longer to reach some milestones, and that's okay. There are so many other things she has accomplished. She is still like any typical toddler. She laughs, cries, gets scared, shows excitement, and is just filled with so much personality. She is so loving, kind, and caring. She has given me a whole new outlook on life and love. She is my greatest teacher. I watched as my family accepted and loved her for who she was and my hope is for others to do the same. Scarlett is pure magic. If I could go back to the day she was born, I would. She makes my world a better place, and I can't imagine a life without her in it.
