Difficulties and blessings of having a baby with Down syndrome

March 21st is World Down Syndrome Day (WDSD) - a global awareness day for Down syndrome. Down syndrome (or Trisomy 21) happens when an extra copy of one of the 21st chromosomes makes its way into most or all of the cells in a developing fetus, usually during egg or sperm division. This also happens at random, meaning it's hard to anticipate that your baby will have Down syndrome if you don't have one of the risk factors, like a higher maternal age or already having had a baby with Down syndrome. We at Lil’ Labmates talked to Glorimar Ruperto to better understand what it's like to have a baby (and now a toddler!) with Down syndrome.
Meet Gianna Isabella Questell, or Baby G for short. She was born on April 14th of 2019, and that same day was when her parents, Glorimar Ruperto and Enrique Questell, found out this cutie had arrived with an extra chromosome 21. During our interview with Glorimar we discovered how confusing it first felt to hear this news. “As first time parents, we weren’t even thinking about the possibility of this happening or what it could mean for our baby to be born with Down syndrome. On the other hand, this is our first baby - we don’t have anyone to compare it to so we are learning everything as we go.”
Learning about what Baby G’s diagnosis would mean for their family in the short and long term has been a difficult process. They didn’t know another family who had gone through their experience and all the information they received was through Google. A very important resource in their learning process was the non-profit organization GiGi’s Playhouse. “At that time we were living in North Carolina and they were able to provide us with so much needed information and also introduced us to other parents like us. It was truly an incredible experience to have access to so many resources through this community.”
Glorimar, like any other first time mom, has faced many challenges including figuring out how to be the best mom, finding time to work on her business while staying at home with Baby G, organizing schedules between both parents, etc. However, one thing that she wasn’t expecting has been her quest to find toys that are educational and developmentally enriching. The developmental process is very different for each baby with Down syndrome, but they usually lag behind in at least one of these four areas: social emotional interactions, communication, motor skills, and cognitive skills.
“In our case it was fine motor skills. For example, she has a hard time pointing to things and she doesn’t have a lot of strength in her hands. Because of this, I’ve put so much effort into finding toys that will help Baby G develop these skills. I am always looking for educational and functional toys that are just hard enough for her to push her to learn something new or practice a skill but also toys that she will have fun with. And the ones that she currently uses really vary across designated or suggested ages: some are meant for younger babies and some are meant for older toddlers. There really isn’t a perfect fit for what I am looking for. And it’s funny how the toys you expect them to like the least are the ones that she loves the most.”
Research from expert Sue Buckley also shows that babies with Down syndrome can learn to read by the age of 3 years and that reading to babies from a young age can really benefit their speaking abilities. Glorimar explained to us how much Baby G loves to read. “Although she is still not speaking, I’ve taught her some sign language so we can communicate. We have one specific sign for books and I know every time she makes it, it’s reading time for us!”
Although Baby G is a little behind the expected fine motor skills and communication milestones, she is a very happy, smiley, and alert baby. Glorimar very proudly described her as “ella es un amor” - or she is a lovely happy baby. “For some reason some parents expect her to be sleepy or slower because she has Down syndrome. But it’s quite the opposite with her. She just started walking and she is running around all the time - full of energy and life!”
Join Lil’ Labmates in raising awareness about Down syndrome by participating in the #LotsOfSocks campaign during WDSD. All you need to do is choose some socks that are going to get noticed. We’ll be sharing our funky socks on Instagram and Facebook so get your friends, classmates and colleagues to show their support!