“My OB guilt tripped me into getting the 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. A feeling 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.
On September 13th, I get an email from my OB. She starts off by telling me my baby is growing well and looks healthy. After that, she wrote, ‘There was a small calcification in one of the baby’s heart muscles called an echogenic focus.’ She said it was a common finding in the great majority of situations, which then followed with, ‘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. As my weeping echoed in the women’s restroom, hoping no one would walk in, I finished reading. She wrote, in my baby’s case, they were waiting on the genetic tests, the heart formed normally, and she is at 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 my baby will have 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 OB will go over the rest with you at your next appointment.’
Finally the day of the appointment slowly approached and I was so anxious. ‘Your 1st and 2nd trimester blood screening came back negative, her neck measured normal, and there was not one marker of her showing signs for Down syndrome.’ She told me there was no issues with her heart and it is likely to resolve in the 3rd trimester. ‘So, although everything was negative, we are obligated to give you a ‘risk factor’ to minimize repercussions.’ She assured me of this many times. I felt like I could finally breathe.
Throughout the rest of my pregnancy, Down syndrome was still in the back of my mind. I would even research what to look for and study my sonogram pictures. The feeling slowly started to fade to where we just didn’t think about it anymore. We felt positive and were no longer worried about it.
Fast forward to my due date, it’s 2 o’clock in the morning, my water breaks on the toilet. No contractions, no leaking. I assumed it was urine, so I 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.’ But for the first time ever? On my due date? I go about my day and something was just not feeling right to me. It’s now 8 p.m. and I decide to call the nurse back and ask if I can come in to get checked.
We get to the hospital, we are put in a delivery room, and wait for the midwife. She swab tests me and it came back negative for amniotic fluid. She then checks the fluid around the baby and notices it’s low. ‘Oh you’re probably dehydrated, so we are going to give you an IV of water.’ Two hours go by and another ultrasound is done. The fluid was still the same. ‘Well it looks like your water did break, we are going to admit you and start the induction.’
As they start monitoring me and my baby, they notice her head was very low and her heart rate was slow. Because of this, they did not want to give me Pitocin. I still wasn’t dilated. ‘We are going to insert a balloon catheter into you and you’ll have it for 12 hours while it expands and gets you dilated.’ I thought, ‘okay, how bad can that be?’ HA. It was worse than labor itself. The male doctor was not gentle either. It was horrific and I was not quiet about it. ‘Okay it’s in, we are done.’ Those words were music to my ears.
The next 12 hours were full of agony and restlessness. I was dilated to 4cm and received an epidural at 6cm. Things started progressing quickly – it was finally time to push. After a difficult 25-hour labor, 5 minutes of practice pushing with the nurse and 2 pushes with the doctor, my Scarlett Rose was finally here. She was very purple and was not crying. They plopped her on my tummy, facing her daddy, and I cried the happiest tears I’ve ever cried. But, my husband looked at me with the most concerned look on his face. He knew.
The room was suddenly 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. The nurse on call that night came to me with concern. ‘Is she okay?,’ I asked. She nodded yes and stayed quiet. Next thing I know, a different doctor, whose face I’ll never forget, comes in the room and goes straight to Scarlett. He then approaches my husband and I, with the most concerned look on his face said, ‘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 moving in slow motion.
Before they took her away to the NICU, we were able to have a few moments alone with her. They handed her to me, I looked down at her, and I knew. ‘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 true. ‘I’m young, there is no way. I did the tests. I don’t know how to raise a baby with Down syndrome.’ There I was, holding my baby I felt like I didn’t know, grieving the loss of the girl I had been waiting 9 months for.
The doctors left and sent in my mom and dad. I couldn’t hold it in anymore. The moment they saw me holding her, I broke into tears. Their excitement turned into concern. ‘She has Down syndrome.’ My mom immediately came to me and picked up her grandchild. ‘Oh, Kimburli, she is so beautiful and so perfect.’ They were over the moon in love with her. Our short moments passed, and she was headed to the NICU.
My first visit with her that night was sweet. My husband and dad were able to spend time with her in there while I was getting taken care of, so my mom and I went to visit her together. I could hear my mom 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.’ Although I was still grieving, my main worry became her health and being able to take her home.
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 is a very rare condition that causes an extra electrical pathway in the heart. Our visits with her were bittersweet. It was heartbreaking to see her struggle, but we made the best of it. We were there every 3 hours, bonding with our girl.
It was day 2 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 in my life. I had carried this sweet life for 9 months, hoping, wishing, dreaming of how perfect it was going to be when 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. Fortunately, since we were one of the only parents that were so consistent with our visits, the hospital gave us a room to stay in until she was discharged.
Day 4 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. Day 6 in the NICU, Scarlett was finally strong enough to go home.
That first week gave me a whole new outlook on life and love. I watched as my family accepted and loved her for who she was, and I deeply needed that. We all re-live and talk about it every now and then. My mom once said to me, ‘I was so scared for you. Scared that you weren’t going to be okay. But, you are so resilient. You turned a ‘why me’ situation into a ‘thank you God situation.’’ It scares the hell out of me to think that if I didn’t go with my ‘mom instinct’ of going to the hospital, and just went to bed that night, Scarlett probably wouldn’t be here today.
We are all head over heels for this girl. She is pure magic. It’s definitely been a roller coaster this past year. I’ve had hard times with her not reaching milestones and all the ‘unknowns’ in the future. But let me tell you, she is the biggest blessing in my life. I have fallen so deeply in love with her diagnosis. 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.”
This story was submitted to Love What Matters by Kimburli Bridges of Riverside, California. You can follow their journey on Instagram. Do you have a similar experience? We’d love to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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