‘I don’t know how to tell you.’ He looked fearfully at her twin. My body turned into a science experiment.’: Preemie twin diagnosed with Down syndrome, ‘We truly are the lucky few’

“After multiple IVF attempts, we finally had success! ‘Congratulations, you are having twins!’ My husband turned white as a sheet while I just smiled. Deep down, this is how I knew it would turn out.

It was a rough pregnancy and I was hospitalized once due to a short cervix. The goal was to keep them cooking for as long as possible. I had multiple monitoring appointments every week that were only supposed to be 20 minutes but would turn into two hours because Baby A would not hold still. After a few more months of close monitoring, Baby A was rapidly starting to lose weight. I was sent to the hospital for an emergency C-section because Baby A’s cord had reversed and she was getting little to no nutrients. I was scared for the babies but elated they were only going to be six weeks early. I was previously given a steroid shot to help their lungs develop, just in case they were born early, and they stayed in long enough to feel comfortable about them being born. The doctor said she would do better in the NICU at this point and it was our only option.

That evening, we headed into the operating room. They had to try four times to give me the epidural correctly and I was instantly sick. I had a severe reaction to the medication and was vomiting the entire procedure. It was such an out of body experience to know important events are happening around you and not being mentally present. My body had turned into a science experiment I literally had no control over.

When Baby A came out, the nurses gave her a bottle and she immediately drank the entire thing because she was starving from weeks of limited food. The doctors noticed her facial features, as well as other distinctive markers, and sent a blood test to the lab to test for Down syndrome.

I was completely out of it for the next 24 hours. I was violently ill and incoherent. The doctor spoke with my husband about her expected diagnosis and attempted to talk to me through the sickness bag I had permanently in front of my face. Those 24 hours felt like a dream. I wasn’t sure if I was awake or if I had just given birth to two daughters. The next evening, I was able to be rolled down to see them. I was aware of my surroundings but weak and still had vomit in my hair. Baby A was now named Ariel. I looked at her tiny 3-pound, 4-ounce body covered in wires and asked my husband if the doctor had been telling me something happened to her. He got choked up and said, ‘I’m glad you remember because I didn’t know how to tell you.’ One of the nurses on duty that night told him she had a mom friend who was involved in the Down syndrome community and could talk to me.

Baby B was named Katalina after the islands off the coast of California. We agreed on that name while taking a cruise and sailing away at sunset. I was having to give myself hormone shots while on that trip and it was intense and painful. Well, watching the sky turn golden from the rays of light, the shots were suddenly reigniting my desire to see this journey through. Matt told Nurse Sara, ‘Katalina’s perfect,’ while looking fearfully at Ariel. Sarah told him reassuringly, ‘Ariel is perfect too.’

Ariel was officially diagnosed with Down syndrome. We ran into some body-regulation problems, glucose problems, and had a scare from some fluid being in her brain. She had a feeding tube and caught a cold in the NICU. She was diagnosed with ASD and VSD heart conditions, which will require surgery. The first night, I googled what kind of jobs individuals with Down syndrome could get. I looked for what kind of life she might have and anything to grasp onto. It was mentioned in passing I could give her up in the hospital. That was the moment I went from an individual who just created two humans to being a mom. From that moment forward, all appointments, all obstacles, and all milestones were attacked with the intent to overcome and make sure she has the life she deserves.

Fear eventually faded as she overcame her medical issues and excelled in therapy. Physical therapy, occupational therapy, feeding therapy, water therapy, endocrinology, cardiology, high-risk follow-up, brain scans, and blood draws were our life now and Ariel smiled through it all of it.

Sara introduced us to her friend who is involved not only in the Down syndrome community but who has a daughter who models as well. I wanted Ariel to have something of her own and be empowered and confident. I wanted her to advocate for her community and she has started modeling as well. She loves it and loves being in front of the camera.

I love seeing how she inspires people, but she inspires me every day and is making me into the type of mom she needs me to be. She is helping teach patience and that being different is okay.

One of the most rewarding things is watching Ariel and Katalina while they’re doing therapy learning a new skill, then watching them do that movement on their own correctly in real life. I love to watch them cheer each other on when the other accomplish something. Most of my frustration comes from having to be in so many places at once. There are two of them and one of me. One of our favorite activities is hanging out at our friend’s pool on the weekends. Their older brother and sister and cousins are in their play area so they can show off their new skills.

Our daily rundown consists of therapy, feeding, exercise, walking the dogs, traveling, and visiting friends on the weekends. During the pandemic, therapy has changed to teletherapy so there’s more work at home and less socializing. The girls are still meeting their goals with help from their grandparents and their babysitter, Ranee, who helps out on days Mom and Dad have to work. We have a large extended friend support system and lots of aunties who are always available to extend a helping hand.

We do have an online support through our sisterhood page, and Ariel also has her Instagram. Now there’s the ability to focus on the quality time I felt like I was missing when our schedule was so hectic. Ariel is a positive and hard worker who enjoys her friends and family. She loves music and she knows how to work a camera. Her beautiful eyes have a way of staring into your soul. We hope she will have an amazing life as she grows up. Sacramento has a very big support system within the Down syndrome community. There’s a whole group of people who are rooting for her and her education.

I love our life and I wouldn’t change a thing about it. We truly are part of the lucky few.”

This story was submitted to Love What Matters by Kristal Hernandez from Sacramento, CA. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.