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Cheering Elliot On: The Bird Family’s Life with a Rare Diagnosis

As any parent has witnessed, sibling interaction can morph from sweetness to squabbling in seconds. For Elliot Bird and his sister Amelia, that description pretty much holds true—with one notable difference. “Amelia is very much the ‘big sister’ even though she is two years younger,” explains their mom, Anna Bird.     

“They have a typical sibling relationship; they fight, they argue, they push each other’s buttons, they break each other’s toys. They also have a unique side as well,” she continues. “Amelia translates Elliot’s speech for people, she helps him with tasks that are harder for him, and she makes sure he looks for cars before crossing the street.” 

Elliot and his Sister AmeliaElliot and Amelia’s dynamic is different than many pairs of siblings, but it’s one that might sound familiar to parents raising a typically developing child alongside a child with significant medical needs. Elliot has a rare chromosomal abnormality; partial trisomy 13 with partial deletion of 14.

“His chromosomes are one-of-a-kind—literally no one in the world has it,” Anna shares.

“Doctor Shopping”

Elliot’s parents wouldn’t learn their son’s formal diagnosis until after his birth. But they began to suspect problems at Anna’s 20-week ultrasound when the obstetrician detected Elliot’s cleft lip and palate. Anna and Elliot’s dad, Jared Bird, dove straight into what Anna describes as “doctor shopping” for a surgeon to repair Elliot’s cleft. Their search quickly ended at Gillette Children’s. Elliot and his familyAfter Elliot’s birth, he spent 14 days in the neonatal intensive care unit. Anna and Jared fed him with bottles specially designed for infants with clefts, and he visited Gillette at two days old.  Cheryl Cermin, DDS, fitted Elliot for an OrthoCleft retainer, a presurgical orthopedic device shown to improve the outcome of cleft lip repair surgery.

The Birds brought the device home when they left the hospital—a departure that Anna distinctly recalls as terrifying. It’s a feeling most new moms can relate to, but intensified by Elliot’s special needs. “I remember looking at Jared, like, ‘I don’t want to leave!’” remembers Anna.

Elliot's sister, Amelia, is

Elliot's sister, Amelia, is "his biggest cheerleader and fiercest protector," says their mom. 

A Whirlwind Year

Elliot and his parents left the hospital and embarked on life as a family of three. To describe their lives at the time as busy would be a massive understatement. “It didn’t hit me at the time, the severity of what we were dealing with. We were on autopilot; it was kind of a blur. We were at some doctor’s office at least twice per week, and Elliot had four surgeries before his first birthday,” Anna shares. “On top of that, we had just bought a home and were planning our wedding.”Elliot and Amelia in the skyway at Gillette

Besides surgeries to correct Elliot’s cleft lip and cleft palate, a neurosurgeon discovered he had a tethered spinal cord, which can cause problems if untreated, and performed corrective surgery when he was 6 months old. Gillette soon began to feel like home for the Birds.

It’s our home away from home,” Anna says. “It sounds so cliché because I’ve heard other parents say it too. We come here, whether it’s for surgery or therapy, and I literally relax. I know we’re safe.” The Birds give a special shout-out to “amazing” nurse Matt, who cares for Elliot as he’s coming out of surgery.

With Childhood Comes New Challenges

Life for the Bird family today seems calm when compared to their early years with Elliot but with growing up comes uncharted territory—and that poses very different kinds of challenges. Anna admits she struggles more with the emotional aspects of Elliot’s special needs than she ever did with the medical.

Elliot at Gillette“Elliot’s starting to realize that his speech sounds different. He’s starting to realize his handwriting is not as great as other kids. The medical stuff makes more sense—you can read about it and research it. With this stuff there are no direct answers because it’s all related to your specific kid. He’s handling everything like a champ.”

Anna and Jared approach questions about Elliot’s differences as a team, whether they come from Elliot's classmates, Elliot's sister, or Elliot himself. It’s a careful balance—they don’t want Elliot to feel as though he’s on display, but also want to include him in the conversation.  

“We make it a family thing. Amelia actually asks more questions than Elliot does. The other day she asked why Elliot’s nose is flat. We bring it down to her level as much as we can,” Anna says.

Sibling Love

The Birds share that both Elliot and his sister love coming to Gillette, so much so that it’s sometimes used as a treat—‘If you’re a good listener at school today, you can come to Gillette.’ Elliot receives weekly speech therapy and occupational therapy, and this past summer made big strides in both, especially in speech. His therapists really ‘get’ him, say his parents; they take the time to build trust.

“Being able to see that quick progress, it’s what gets me through a lot of days,” Anna says. “He’s always been a chatterbox but it’s more the pronunciation, and making the effort to be clearer.”

Elliot, Amelia and Anna

Six-year-old Amelia, for her part, likes the coloring pages, the playground and cheering her brother on. Spend a few minutes with the duo, and it’s obvious their bond is both sweet and one-of-a-kind. The little sister who best knows how to push Elliot’s buttons also best knows how to help him and lift him up. 

“She is Elliot’s cheerleader,” explains Anna. “When he gets frustrated, she is there to encourage him and tell him he's doing a good job and that ‘it's OK, just try again.’ She’s also Elliot’s fiercest protector. If Amelia thinks someone is picking on her brother, she will use her voice. And she has a loud and powerful voice.”

Elliot and Amelia Smiling