When Amber Rojas gave birth to her fifth child, a girl she named Amadeus, she knew something was unusual. The 35-year-old from Texas had what she called a “hard and fast” water birth, then was ready to meet her new little one.
“Next thing I know, my sweet baby is in my arms and [I have] so many emotions,” she tells Health. “As soon as I looked down, I saw it. I saw it in my baby’s face. I thought to myself…my baby has Down syndrome.”
Rojas says that in those first hours, holding Ami felt "different" than when she first held her other children, and that Ami felt “really limp” and had smaller eyes. Her midwife thought that Ami showed signs of Down syndrome. It was surprising; although Rojas was 35 and thus at a higher risk of having a baby with Down, a sonogram done during her pregnancy showed "zero" signs of concern, she says.
The family took the newborn to the hospital, where doctors confirmed Rojas' suspicion. At that, her maternity leave plan completely changed, and she stayed at the hospital with Ami while her husband took care of the couple’s other children. There, Rojas began planning to “build a positive experience” for her family.
“I immediately became a worker bee,” she says. “I wanted to know everything they knew about babies with Down syndrome so I could best care for my daughter. We didn’t care that she had Down syndrome because we were all obsessed with her!”
Rojas says her daughter had a low resting heart rate when she was born, a sign of a heart defect, which is typical among babies with Down syndrome. At the time Health spoke to her, Rojas was back at the hospital, where now 5-month-old Ami just underwent open heart surgery.
After Ami was diagnosed, her four older children expressed concern that their baby sister would be made fun of or treated differently, but Rojas reassured them. “It’s our job to help educate others and to lead by example for Ami, so that she [can have] the life we all do,” she says. “They love her, they love sharing her story with their friends. And they are so excited to be apart of the Down syndrome community.”
With support from family, friends, and their community, the Rojas family continues to adapt to the potential challenges Ami might face.
“Mom guilt is strong and real,” she says. “While I feel we all try to share and educate, some don’t accept it the way we do. Many have called my daughter sick, or have asked what’s wrong with her. I’ve come to the understanding that some just don’t and won’t receive her diagnosis the way we do. And that’s hard.”
Rojas says she and her family have received support from families all over the world, which has helped remind her of the love and strength that surrounds her.
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“Our family was going a million different ways, and Amadeus has brought us together,” she says. “We are learning together about a whole community that we never knew anything about! But at the end of the day she is our baby and we are her family. To us she is perfect. We don’t see her diagnosis or her label…We see Amadeus Reign Rojas.”