Celebrating Those with Down Syndrome

Three-year-old Brooklynn Heberlein started preschool this year. She loves books, animals, her little sister Brylee and music—she is an especially big fan of heavy metal. She also “has a great sense of humor” and can be “a little feisty” according to her grandmother Renee Menefee. Brooklynn is also one of approximately 400,000 people in the United States living with Down Syndrome.

Typically, a baby is born with 46 chromosomes. Babies with Down Syndrome have an extra copy of one of these chromosomes, chromosome 21. Children with Down Syndrome often face many developmental and medical challenges. Brooklynn spent her first 40 days in the UC Davis Children’s Hospital’s Neonatal Intensive Care Unit, Sacramento, CA, and at five and a half months underwent open-heart surgery.

“Twenty-five percent of the Down Syndrome population has the same heart condition (atrioventricular septal defect) as she does,” explained Brooklynn’s mom Caitlin Heberlein. Doctors gave Caitlin and her husband Jordan a grim prognosis for Brooklynn. “We were told that she would not be leaving the hospital alive, and if she did, she would not make it to two years old.” They were also told that another surgery was almost inevitable.

Despite that prediction, Brooklynn just recently weaned off of her last heart medication, and her doctors do not anticipate more heart surgery at this time.

When asked what advice she would give to a parent upon learning of a Down Syndrome diagnosis for their child, Caitlin says that connecting with families through the Down Syndrome Diagnosis Network (DSDN) has been “life-changing for my husband and me.” The family has made many close friends from around the country who are on the same journey.

Upon learning that her baby might have Down Syndrome, Caitlin spent at least eight hours a day researching. Although she found comfort in this, she says it is also important for new parents to mentally prepare themselves for some of the things they may find.

The struggle to get Brooklynn all of the services she needs and the acceptance that she deserves can be taxing. “Actually raising her is easy, but the fight is exhausting,” Caitlin explains. She is passionate about educating others and doing it “in a positive light” so that people will come to realize that despite her many challenges, Brooklynn is just like any other child in so many ways. “Having a child with Down Syndrome doesn’t make my life different. I’m still a mom. She’s still a kid. It’s not as different as everybody thinks it is,” she states.

Caitlin also emphasizes that the best thing that anyone can say to the parents of a new baby with Down Syndrome is “congratulations.” For new parents who may be scared about their uncertain future, that word can change everything.

For more information, please visit the Down Syndrome Diagnosis Network.

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