‘He’s been born, and YOU were chosen!’ Only 4 pounds, I was scared to even TOUCH him.’: Couple adopt baby with Down syndrome after scare, ‘We were meant for this’

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“The doctor said he’d call a week ago, but still no news. I knew something was wrong. So many messages had gone unanswered. Then, while out for a walk with my mom, my phone rang. I answered it and heard a nurse say she was going to hand the phone to my doctor. It was the call I’d been waiting for but not the call I wanted. He explained, ‘Your baby’s prenatal testing had identified a chromosomal disorder. You’ll have to schedule an appointment with a genetic counselor.’ That was it. I got the name of a syndrome but no other information.

Courtesy of Ellie Sanazaro

I continued walking and talking with my mom as if everything was fine, pretending the call had been nothing more than the gender results. I wanted Scott to know first. But behind my calm demeanor, my mind was racing. How did this happen? We were 24 years old and healthy. No one in our families had any history of genetic disorders. We decided to get the early prenatal testing simply to find out the gender as soon as possible. It never even occurred to us we’d get any more information.

It was a random day off work for me, so I got home from my walk a few hours before Scott. I scoured Google for any information I could gather. Turns out, there wasn’t much. Our child might have a range of delays, might have seizures, might have physical abnormalities. Scott texted me, ‘Did you find out the gender?’ I responded, ‘YES!’ with a bunch of emojis. I didn’t want him to know anything was wrong.

Finally, I heard the car pull into the driveway and the front door open. Scott rushed in, excited. Forcing a smile, I said, ‘It’s a girl.’ He hugged me tight and for about 5 seconds, he got to celebrate with untainted joy the gender of our first baby. While he was still hugging me, he felt me inhale and knew I was crying. I looked at him with tears and said, ‘She has an extra chromosome but she’s not going to die. She just might have some delays and…’ Scott cut me off and pulled me back in. ‘It’ll be ok,’ he assured me. I never knew joy and sorrow could coexist so completely together.

We went to the couch a continued to google for hours. I told Scott I didn’t want to tell anybody. I wanted to keep the news to ourselves until she was born. Scott, though, knew we needed to tell our family and friends. He knew we’d need support during this time. So we sent an email to our immediate families. We also prayed and, though we were still so sad and confused, God gave us a strong sense of purpose. We felt confident He had chosen us to be this little girl’s parents and would equip us with everything we’d need. We decided to name her Rosalie Matilda, a name whose meaning embodies beauty and strength.

The next 6 months were filled with emotional ups and downs. Some days, we felt so joyful, knowing life with Rosalie would be our best adventure yet. Other days, the sadness was overwhelming. Our daughter had not even taken her first breath and life had already been unfair to her.

Despite being told the prenatal testing we’d received was very accurate, we learned it was not considered diagnostic, so there was a chance Rosalie could be born with no chromosomal abnormalities. We decided to wait until after she was born to confirm the initial test results because of the accompanying risks. In some ways, knowing there was even a small chance the original test had been wrong was harder. Even still, throughout the pregnancy, Scott and I felt God changing our hearts, preparing us to parent a child with special needs. And because of this, we felt almost certain her diagnostic results would confirm the initial test result.

As summer turned into fall, Rosalie entered the world.

She was beautiful with more hair than we’d ever seen on a newborn. For a week, we didn’t know if Rosalie’s initial test results had been correct or not. But honestly, once she was in our arms, we stopped wondering. We knew the number of chromosomes she had would have no effect on how we loved her. But to our great surprise, after being home a few days, feeling completely in love and also totally sleep deprived, I got a call from a nurse. This time, she did not hand the phone to a doctor. ‘Rosalie’s testing came back normal,’ she informed me. In disbelief, I had to ask her to clarify two times just to be sure.

After hanging up, I ran in and jumped on the bed where Scott was sleeping. ‘She doesn’t have it,’ I said, smiling. Like me, Scott also had to clarify. ‘Wait, what?’ ‘She doesn’t have it.’ We hugged and texted all of our friends and family who’d been praying for us. It was a joyous afternoon spent celebrating our little girl and the many answered prayers.

Weeks passed, and I was loving being Rosalie’s mom, but something kept stirring in me. Once I knew Rosalie was born typical, any thoughts of parenting a child with special needs would have been long gone. But I couldn’t shake the feeling. Hadn’t we felt like God had spent 6 months of pregnancy preparing us to welcome a child with special needs into our family? Hadn’t we said we felt like God had changed our hearts? Hadn’t we felt God’s purpose in calling us to be special needs parents? Was it all for nothing?

I pushed the feelings away. Of course, I was meant to be Rosalie’s mom and she didn’t have special needs so I shouldn’t worry, I thought. But the feelings persisted. I couldn’t help but feel like we were still meant to be parents to a child with a chromosomal disorder. And then one afternoon, the idea popped into my head. Could we adopt a child with Down syndrome? I’d never heard of anyone doing this, but I Googled just to see. The first link to pop up was for an organization called The National Down Syndrome Adoption Network. I opened the page and, in an instant, I knew. This is what we were meant to do.

Rosalie was just a couple of months old at this point. She was having trouble with nursing and sleeping, so I felt a little crazy to even be thinking about adding another child to our family. So I prayed. And then a few months later, I brought the idea up to Scott. I was not surprised when he thought I was absolutely crazy. We’d always talked about adopting but never a child with special needs. In many ways, when we found out Rosalie’s final test results, we felt like we had dodged a bullet. Why would we intentionally run head-first into the situation we’d just narrowly avoided? I didn’t push but I did ask Scott to pray, and he did.

On the day Rosalie turned 1, we found out we were pregnant with baby #2. Of course, this time, we opted out of early prenatal testing and waited for our 20-week ultrasound to find out the gender. It was another girl! This second pregnancy was so much easier both physically and emotionally than my first had been. And during those nine months, as we prayed for the baby girl growing in my womb, we continued to pray for the possibility of adding a baby with Down syndrome into our family. In spring, we welcomed Leonie Ruth.

Courtesy of Ellie Sanazaro

Though my heart had changed in an instant, Scott’s heart-change was a more gradual process. It started with, ‘You’re crazy but I’ll pray.’ Then it was, ‘I do think God prepared our hearts to parent a child with special needs but I still don’t think it’s what we’re supposed to do.’ Afterward, ‘I think you’re right. I do think we are going to adopt a baby with Down syndrome, but I’m just not there yet.’ Finally, one cold December morning, while I was feeding my 2-year-old and 6-month-old breakfast, my phone rang. Scott had left just 15 minutes earlier for work. I answered and he did not hesitate, ‘I was praying and I feel like God is calling us to adopt a child with Down syndrome.’ Just like when I’d received the phone call about Rosalie’s test results, I had to clarify his words. ‘Wait, really?’

The next month we researched adoption agencies and applied for our home study agency. In March, our home study began. In May, Leonie turned 1. In July, we went ‘active.’ And less than 2 months later, we got the call. We’d been chosen by a family. We were matched with a baby boy. Rosalie turned 3 at the end of September and then just 11 days later, we got a text: ‘The baby has been born.’ We packed up our bags and our two toddlers and drove 3 states away to meet our future son.

We stayed the night in a hotel and then the next morning, my parents watched the girls while we drove to meet the baby boy who would likely join our family. Before meeting him, we got to meet his birth parents. And perhaps the most unexpected thing about the whole experience was the love we instantly felt for them. They were beautiful, selfless, genuine people and we felt so lucky to get to have an open adoption with them. When we finally checked into the NICU, we got to see the baby boy for the first time. He was just 4 pounds and I remember feeling so scared to even touch him. He was covered in wires and surrounded by machines but slept so peacefully. Two days later, his parents signed the papers, and he was ours.

Courtesy of Ellie Sanazaro

When we look back to Rosalie’s pregnancy, we now understand why we had to endure the pain of those test results. If it had not been for that tough season, we would have missed out on life with Finn. God turned what was our greatest disappointment into our greatest desire. He turned our sorrow into joy, and we will forever be grateful.

Courtesy of Ellie Sanazaro
Courtesy of Ellie Sanazaro

Our little Finn has been a part of our family now for 13 months. In those 13 months, he spent nearly 3 weeks in the NICU 3 states away. After being home with us for just 2 weeks, he got very sick and was admitted into the PICU for another 3 weeks. He was intubated and sedated and for a while, we weren’t sure if he’d make it, but he did. After being home for over 2 months, he had one more long hospital stay, again for breathing concerns. Finn has been home and thriving since March! He is crawling, babbling, eating, and laughing- all things we weren’t sure he’d do. He inspires us every day! During the last hospital stay, God gave me the idea to write a children’s book about how God created every child, including those with differences like Finn, in His image. It will be available for pre-order on New Year’s Day at imagebearerbook.com.”

This story was submitted to Love What Matters by Ellie Sanazaro of St. Louis, MO. You can follow her journey on Instagram and her website. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

Read more amazing stories about adopting special needs children here:

‘Could I be his family?’ I couldn’t stand how he was still waiting. Sometimes I’d just cry for him. He needed a family.’: Single woman pursues special needs adoption

‘300 plus families passed on a baby boy.’ What would happen to my son? ‘Are you interested in special needs adoption?’: Moms discuss open adoption journeys, ‘We really are a family’

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