An Extraordinary Journey with Down Syndrome: Arlo’s Story - Nemours Blog


An Extraordinary Journey with Down Syndrome: Arlo’s Story

Like many expectant parents, Arlo’s parents couldn’t wait to find out the sex of their baby. When Carlie was 12 weeks pregnant, they opted to get NIPT bloodwork done to find out as soon as possible. When their blood screening came back, Arlo’s parents were surprised to find out that their baby boy had a 98% chance of having Down Syndrome.

“Of course, we were shocked,” says Carlie, “But knowing about our baby’s condition only helped solidify the fact that he was so wanted and so loved—extra chromosome and all.”

“From the moment we got the phone call with our diagnosis, through the rest of my pregnancy and now, we have been beyond blessed with amazing doctors, nurses, and therapists,” says Carlie. “The Down Syndrome Clinic at Nemours has been a beautiful addition to Arlo’s village. We feel like they are truly there for us, not as just another patient, but as an individual family with individual needs. I cannot say enough good about each and every person at Nemours—from scheduling, to the lab, to our doctors! We come from over 2 hours away, and one of my favorite things about Nemours is that they understand that our time is valuable. They work with us to make sure appointments are scheduled in a way that works for us. They never get flustered or frustrated if/when we must reschedule or have an issue. I also love that the Nemours app is integrated seamlessly with Arlo’s care. It makes it so easy to keep track of everything!”

“Arlo is currently 12 weeks old and doing all of the things a baby his age should do,” says Carlie. “We are very fortunate to have a healthy kiddo and we are grateful for him every day. He’s the best sleeper, he loves to play, and I might be biased but his Mama is his favorite person. We feel like a regular family with three amazing kids, one of whom might need a little extra support as he grows into an equally amazing toddler and beyond. While it’s likely that Arlo will receive care and therapy for many years to come, if the first 12 weeks are any indication of the next 12 years, we are in for a life full of immeasurable joy and love. There will certainly be challenges, but we know that with the support we have we can get through anything!”

When asked what advice Carlie would give to other parents in a similar situation, she says, “Dial out from the big picture, which can frequently get overwhelming, and concentrate on one day at a time. There is so much joy in your future!” Carlie also invites parents who have gotten a diagnosis of Down Syndrome or have recently had a baby with Down Syndrome to follow their family’s story on Instagram. “I feel that I can be the confident parent of a child with a disability—even when one year ago that would have been a foreign concept to me— because others have gone before me and shared their stories,” says Carlie.

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