Mom Mourns News Her Baby Has Down Syndrome. Then Daughter's Birth Changes Their Family Plans (Exclusive)
Of having her daughter Aria, Kirstin Czernek says, "I fell instantly in love and it opened my eyes to the Down syndrome community as a whole"
Kirstin Czernek always wanted a big family — though she didn't necessarily always envision the one she has now.
The gym-owner-turned-influencer, who uses TikTok and Instagram to share the story of her growing family and her journey to adopt a child with Down syndrome, initially planned on having three kids with her husband, Tomas.
Today, she has four — one biological child and three adopted from foster care — and two of her children have Down syndrome. And even with the challenges, the couple might eventually make room for more.
"My husband now wants five," Kirstin, 37, tells PEOPLE with a laugh. "I'm working my way there."
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The couple's journey to building their family began six years ago, when they adopted Mia, now 8 years old.
"She's how we started our family," Kirstin says. "We adopted her from foster care when she was 18 months old. While getting placed with her, we were told that her mom was pregnant and they asked if we were willing to adopt both of them."
Mia's brother, Kai (now aged 6) was born six weeks later.
By the time Kai turned one, Tomas was ready for the couple to try for a baby.
Kirstin says she found out she was pregnant within the month.
That pregnancy took a dramatic turn, however, when the couple was told that their baby had a 100 percent chance of being born with Down syndrome.
"I found out about her Down syndrome diagnosis when I was 20 weeks pregnant," Kirstin says. "It was something that had never crossed my mind. I was young, I was 29. It wasn't even on my radar."
Kirstin says she took the remainder of her pregnancy "to grieve the child I thought I was going to have."
The moment her child was born, though, everything changed.
"I fell instantly in love and it opened my eyes to the Down syndrome community as a whole," she says.
The addition of Aria, now 5, to the family changed everything.
"I thought we were going to land at three and once we had Aria, I felt like, I don't think we're done. I don't feel like our family's complete yet," Kirstin says.
She continues: "Aria loves with everything in her. Everything she does is exaggerated. A jump, a smile, a laugh ... That turns off in most of us. We stop living so big as we age. We tone down. Individuals with Down syndrome, they don't tone down. Everything is big, everything is special."
When Aria turned three, Kirstin says the couple began to pray about their next steps and decided on adopting another child — this time, one with Down syndrome, like Aria.
The couple worked with the National Down Syndrome Adoptive Network, which pairs families interested in adopting with agencies that can facilitate the process. They were added to a waiting list, where they sat for two years before Tomas got a message on Instagram.
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"It was September 2023 and this girl was like, 'Hey, I’ve been trying to reach your wife… I know of a situation of a baby boy that will be born with Down syndrome in a few months and the mom is looking for a family who already had a child with Down syndrome to adopt him.' "
After some research to ensure it wasn't a scam, Kirstin and Tomas connected with an adoption attorney and began the process to adopt the baby.
They traveled from their central Florida home to Alabama to be in the room when the baby, whom they named Luca, was born — a moment Kirstin will remember forever.
"It was pretty much as bad as it gets, in terms of what can happen to your baby,” she says.
Luca was born limp and barely breathing, with a hole in his heart and pulmonary hypertension and transferred from a small hospital in Alabama to a larger facility, where he was put on life support for 10 days.
After two months, he turned a corner and on Jan. 10, 2024, he came home.
Now 5 months old, Luca is the perfect addition to the family, Kirstin says.
"It is hard, I’m not going to sugar coat it," she says. "Medically, it can be very difficult. But the positives and the things I get to experience with both of them on a day to day basis … it's such a beautiful, full life that, until you have it, you don't realize, 'Oh, this existed.' "
Her videos on TikTok and Instagram — which help document the experiences of foster care and raising children with Down syndrome — have racked up millions of views, and thousands of comments and messages.
"After Aria’s diagnosis, I would read things online about Down syndrome and everything was so negative," she says. "When I had the opportunity to show a different side — one that was real — it made sense to me."
She continues: "Now, I have so many conversations with moms who are pregnant with a child with Down syndrome and they’re terrified. And they'll message me and say, 'I’m not scared anymore. I’m excited after watching your experience.' That makes it worth it for me."
And while she acknowledges that she might not publicly document so much of her day-to-day as her children get older, Kirstin says she hopes she's able to showcase the beauty of the Down syndrome community — and the unbridled joy that her children experience, and bring to her own life.
"Having a child with Down syndrome is like living in a castle," she tells PEOPLE. "Like you've been given this amazing, beautiful, castle. Not many get to live in a castle and it's not always a fairy tale. There's more responsibility — castles are old, things break down, everything about it is more delicate. But at the end of the day, you get to live in a castle. You get an experience that no one else does."
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