Written by Kate Ortega
Jane came into our world on May 21st, 2017. It was a rainy Monday evening and she came 2 and a half weeks early by C-Section. I was a first-time mother and I remember the feeling of pure bliss as I was holding our sweet girl, only for that feeling to be ripped away from me a mere hour later as the pediatrician told me that our daughter looked as if she had Down syndrome. How could that be possible? I was only 24 years old and I had heard that Down syndrome occurs in older pregnancies. I spent the rest of the hospital stay in a state of denial. I was not going to accept this news until I had confirmation of Jane’s genetic testing.
The genetic test came back positive for Trisomy 21 a couple of hours before our discharge. The hospital sent a social work intern in to hand us one sheet of paper with one website as our resource. We did not meet with anyone else about Jane’s condition at that hospital. They completely and utterly failed us in every regard. The disappointment from that experience still haunts me to this day.
My husband and I loved our daughter more than anything, but it was incredibly stressful for us as young parents to navigate the world of Down syndrome by ourselves. That first year, Jane had two minor heart defects that required no intervention, jaundice, failure to thrive, feeding issues, and a very scary bout of Infantile Spasms that we thankfully caught very early. It was an exhausting year for her and for us, yet we still couldn’t believe that we were lucky enough to have her as our daughter.
Fast-forward to 2021, we became pregnant with our 3rd child, a boy. After having our neurotypical daughter Caroline, we had no concerns about Down syndrome occurring again. That never really happens anyway, right?
At my 20-week anatomy scan, we were pulled into a room with the doctor who went on to tell us that they weren’t able to get good images of the baby’s heart and brain. This can be a soft marker for Down syndrome, she said. I scoffed it off initially – she must have seen my medical records and is just being extra careful. But I took the blood test, just to be sure.
I remember getting the call from my doctor a week later. “Your blood test came back as a high chance of the baby having Down syndrome. I don’t even know what to say…I’ve never seen this before in all my years of medicine.” We were going to have another child with Down syndrome.
I could not believe that this was God’s plan for our life. My initial reaction was, “I have to do this TWICE?!” What are the odds?! Turns out the odds are pretty low. It took me a couple of days to accept this news as our reality and once the initial shock wore off, I began to look at our situation as a clear message from God that this was our path and mission. I became truly excited to welcome another child with Down syndrome into this world.
Our son, Leo is now 17 months old and he is truly a gift to our family. He and Jane are so alike, yet so different from one another. They have a special bond and love to laugh and goof off together. Our daughter Caroline adores both of her siblings with her whole heart and it’s a joy to watch her interact with them, not even knowing a world outside of Down syndrome.
For reasons we cannot fathom, we were hand-selected to be parents to two children with Down syndrome. And while we had virtually no idea what we were doing and we are still learning, we can say without a doubt that we are incredibly lucky. A little extra lucky than the average Lucky Few.
You can connect with Kate and her beautiful family on Instagram @theextralife21