Scarlett Adele, Showing Us the “Up” in Down Syndrome

This is Scarlett. She is the cuddliest little peanut with a smile that lights up the room. She hasn’t fully figured out clapping, but tries her darndest to do it every time she sees someone clap, and it’s the sweetest thing. Her mama says she is like this with everything– “strong, determined, happy, and has the best laugh and smile in the world”. Scarlett also happens to have Down Syndrome.

I’m writing this post today to help erase the stigma around what it means to have Down Syndrome. This is a personal project that I’m really excited to share, and to hopefully work with more families affected by Down Syndrome in the future. Scarlett’s mom, Olivia, has been so wonderful to collaborate with me on this, and has answered a bunch of questions about their personal experience.

Olivia and her husband, Joe, found out Scarlett had Down Syndrome fairly early in the pregnancy. Between 11 and 13 weeks of pregnancy, doctors can do a nuchal translucency scan during an ultrasound to give you a risk factor for the baby having Trisomy 21 (the genetic name for Down Syndrome). Their scan came back with a 1 in 13 chance, so they followed up with a MaterniT21 blood test, which came back positive for Trisomy 21. Olivia was scared and in shock, as well as in denial at first. She went home and searched online to see the likelihood of a false positive, which is very rare. Then mama bear mode turned on and Olivia knew that no matter what, her love for her baby would never be changed, and she would do anything in her power to do what her baby needed.

Babies with Down Syndrome can often have heart defects or other related health issues, so during pregnancy they make sure to keep a close eye on that. Olivia had a fetal echocardiogram that thankfully showed that Scarlett was free of any heart defects! Her pregnancy was otherwise normal and little Miss Scarlett Adele arrived a little earlier than expected at 35 weeks on September 3, 2016 after 25 long hours of labor. She was breathing on her own, and stared right at her mama when they laid her on her chest.

Because she was born under 5 pounds and had trouble regulating her temperature, Scarlett spent a week and a half in the NICU at North Shore Medical Center. They felt incredibly lucky to have this healthy little girl and spent every day and night with their bundle of joy. Today, Scarlett is a totally healthy and happy 7 month old reaching all her developmental milestones. The only issue she deals with is hypothyroidism, and she goes to the endocrinologist for blood tests to keep an eye on her levels. A symptom of Down Syndrome is low muscle tone, so Scarlett participates in an Early Intervention program where she does physical therapy and gets to have weekly swimming lessons.

One of the biggest things Olivia wants people to know about Down Syndrome and Scarlett is that it is not a negative thing! Olivia says, “I personally like to refer to it as UP Syndrome because it never brings us down.” Scarlett is just like any other baby. She loves tummy time and solid foods. She laughs when she’s happy and cries when she’s sad. Her big blue eyes sparkle when she looks at her parents.

Olivia asks that you please do not feel sorry for families that get a Down Syndrome diagnosis. “When you have a child with Down Syndrome, you do not look at your child and see Down Syndrome. I look at my daughter and see Scarlett, and I even forget she has Down Syndrome most of the time. Down Syndrome is not a scary thing and when I was pregnant, the genetic counselors kept telling me how hard and difficult it would make my life, well my life is absolutely amazing because of her and if there is ever a little extra that I have to do for her because of her extra chromosome I will do it without thinking twice, just like every mother would for their child because they’re your child and you love them.” I think this is a really important point. Babies born with Down Syndrome are unique and have their own personal challenges, but so does every child. Scarlett will have special help when she is in school and hopefully posts like mine will help people to know that she is not really that different and can be as successful as she dreams to be.

I really loved getting to do this photo session of Scarlett at my Lunenburg studio. She is a truly beautiful baby and you can tell by looking in her eyes what a sweet soul she is.

If you want to learn more about Down Syndrome or donate to the National Down Syndrome Society, you can go to www.ndss.org.