Down Syndrome occurs when there is a third copy of the 21st chromosome. Because of this, we celebrate World Down Syndrome Day on the 21st of March.  We spoke with a local family whose lives have been blessed by the birth of their daughter, Maddie Jo, who has Down Syndrome. Below is their story. 

"All I kept saying is, 'Does she have it? DOES SHE HAVE IT???'" Katie Hunt Amorello recalls of the day her fourth daughter was born in 2019. "I don’t think there was a dry eye in the room. My husband looked over at me and said, 'Yes sweetie she does!' I will never forget his sweet face with worry in his eyes but staying so strong. I remember at that time she [the nurse] handed her to me and I broke down. Never cried so loud and so much. I was sobbing like I just lost my whole world but also like I just met Jesus! I felt the Holy Spirit right there in my arms. God was in the room with us that day. The doctor finishes up and comes to the bedside and says, 'She is absolutely beautiful!' As she lays in my arms I swear I saw a halo above her head. So scared but so proud. I cried and just held her with Joe right by my side! She was everything I didn't know I needed so bad!"

Maddie Jo's entrance into the world was quite dramatic, which her mother says doesn't surprise her at all given her feisty personality. Maddie Jo's mom, Katie Amorello, had done some preliminary testing during her pregnancy, which showed a high risk that her baby had Down Syndrome, but she hadn't gotten definitive testing because she had a high risk of preterm birth due to her previous deliveries. "It just wasn't worth the risk to know for sure," she explained, "but we had extra ultrasounds and that sort of thing which all showed markers for Down Syndrome and had them keeping an extra close watch on me." 

Her medical team prepared as if she would be born with the condition, which can sometimes lead to heart issues that need to be addressed immediately after birth. They had actually seen some concerning heart readings at one of Katie's ultrasounds. The doctor even showed them on the screen where the heart defect was and what it meant. However, Katie says, "We [went] to the appointment the next day with the Peds Cardiologist and she tells us she can't find the defect. Her heart looks completely healthy! The defect they saw isn't there anymore."

"Maddie is named after my best friend Madeline Hemba who was killed in a boating accident in 2018. We just know that our Maddie has her own guardian angel looking out for her from heaven," says Katie. 

Maddie Jo's heart remained completely healthy and the doctors told her family that yes, she had Down Syndrome, but she didn't have any of the concerning issues that might keep her hospitalized. They explained that the Amorello family should expect her to have delays in some areas. "She's risen above all those expectations though," says Katie. "She's our fourth daughter so I think in some ways it's just like "well, get on board!' and she does. We set our expectations high and she always meets them. Sometimes it does take her longer to learn something than the average kid, but she always learns it!"

One misconception that Katie says people have about children with Down Syndrome is that they're always happy. "She's a fireball!" she laughs, "she has all the same feelings as the rest of us that's for sure." Now Maddie Jo is in Pre-K at Silliman where she's thriving. "Her peers and teachers are so good with her and she just fits right in," says Katie. Many parents worry about bullying or exclusion when they find out that their child will have a disability, but that hasn't been a problem for Maddie Jo, especially with those three older sisters to look out for her. 

 

When asked what advice Katie would give other parents facing a potential Down Syndrome diagnosis, she doesn't hesitate to say that she would absolutely love to talk to anyone who is in that situation, regardless of if they know for sure their baby has Down Syndrome or not yet. She also recommends Upside Downs "an organization committed to helping the Down syndrome community through new parent support, recreational activities, raising awareness and advocating for a brighter future."