It was the beginning of 2020, and Jessica Quarello was preparing for the arrival of her second daughter. Besides moving to a bigger place with her family, navigating the worldwide Covid-19 pandemic, and being furloughed, Quarello was also struggling with some health issues– specifically a problem with her spine.
“The good news about having an issue while pregnant is that I got better monitoring, because I was high risk,” Quarello said. “So, I got checked every month, and the doctors told me my baby girl was growing on track.
“We were expecting a perfectly healthy little girl.”
Then, July of 2020 came. Quarello had her planned C-section.
“In the middle of my C-section, the doctor whisked my husband to the corner of the room,” she said. “I’m on the table, and unbeknownst to me, the doctor is accosting him with all this information and he started to pass out.”
The doctor informedQuarello’s husband that their newborn had a flatness to her face and some other physical characteristics of Down syndrome. A few hours later, Quarello was told, too.
“I was so confident that she was fine, because we had done so much monitoring and intervention to get her out safely,” Quarello said. “There was no way that anything was wrong.”
In this moment of bliss, the Quarello’s named their beautiful baby girl, Adeline.
That moment turned into a parent’s worst nightmare: soon after she was born, doctors rushed Adeline to the NICU due to low oxygen and breathing issues. Twelve hours passed before Quarello healed enough from her C-section to walk herself to the NICU.
(Note: Because of Covid, the hospital had protocols in place for the number of people who could be in the NICU at once, meaning Quarello had to be alone when she went to see her baby. She couldn’t have a nurse wheel her into the NICU. It took 12 hours for Quarello to heal enough to walk on her own).
Right away, after seeing Adeline, she noticed some of the physical Down syndrome signs.
“I actually had one of the NICU nurses, her name is Angel, and honestly, I think she was a gift from the heavens,” Quarello said. “Because I remember asking her, I was so panicked, and I said, ‘Do you think that she has Down syndrome?’
“And she looked at me, and she was like, ‘I don’t know if she has it or not, but I know that she’s your baby and that she loves you, and you should focus on that.’ And it just hit me. I’m like, ‘Oh my God, I’ve been inspecting this child for two days, like, I need to be present with her and wait until we find out.’”
Five days later, the blood test came back: Adeline had Trisomy 21, or Down syndrome.
“We felt such relief to know,” Quarello said. “I was so thankful to know that she had Down syndrome, but I was also so scared.”
“It was sort of like, what the heck are we going to do? What is our life going to look like?”
But what Quarello couldn’t have ever imagined is how beautiful her life would turn out to be.
Quarello, a singer, has a following on TikTok. After telling just family and friends about her daughter, she started sharing videos and stories of her life with her children. That soon turned into a yearning to do actual advocacy.
And then, a few months after Adeline was born, Quarello met Taryn Lagonigro, another mom to a baby with Down syndrome, through Stepping Stones, a New Jersey school for kids with Down syndrome.
“As we all push for inclusion for our kids in everyday life, it felt important to create that within the disability community. Why should we have a platform where we only celebrate one disability and not all? We all share a common goal – finding support and celebrating the big, the small and everything in between,” said Taryn Lagonigro.
Lagonigro and Quarello decided to partner. They created Extra Lucky Moms.
Extra Lucky Moms is a blog and business that shares stories from, and, about moms with children with disabilities, people with disabilities themselves, caretakers, friends, and siblings to people with disabilities, and professionals who work in the disability space.
They also sell merchandise, with part of the proceeds going to organizations and nonprofits supporting people with disabilities, host events, and spread awareness about disability through social media.
“When I received Adeline’s diagnosis, I was so sad, because I was so ignorant of the beauty that is disability motherhood and disability at-large,” Quarello said. “And now, my biggest goal is to show someone completely unaware of what this life looks like — the beauty of it.
“And with that, I hope to change minds, change hearts, and make the world better.”
Each year, according to the CDC, approximately 6,000 babies are born with Down syndrome in the United States, which is about one in every 700 babies born. Mothers and families of children with disabilities often feel isolated and alone, but organizations like Extra Lucky Moms hope to change that!