farragutpress

Growing up Ivy

Meet this energetic five-year-old who wins the hearts of newcomers in her orbit

February 19, 2025 by Michelle Hollenhead, Special to farragutpress

Ivy Edwards is a typically energetic five-year-old, playing enthusiastically with her almost three-year-old brother, Henry, reading out loud from her massive book collection, dancing with or without accompanying music and delighting in eliciting laughter from those around her - even newcomers to her orbit.

What is not typical is how much she has overcome in her short life to become the exuberant feisty cog central to her loving close-knit family.

“When Ivy was born, we had not done any genetic testing, or even gender testing — we wanted to be surprised,” said her mother, Amanda, who shares Ivy, Henry and four-month old Violet with husband, Bryce. “But, within just a few hours, we found out she was a Down syndrome baby and, additionally, had heart issues.”

Doctors with East Tennessee Children’s Hospital performed an array of tests, one of which revealed an atrioventricular septal defect, or holes, in two separate chambers of Ivy’s heart.

“We met Dr. [Sumeet] Sharma the day after she was born,” said Amanda of the pediatric cardiologist, “and he immediately put our minds at ease, by drawing her heart defect on a white board, and telling us what was wrong.

“It was the first time since she has been born that we really felt encouraged about what might be ahead of us, and he was truly a patient advocate for Ivy from the very beginning.”

Dr. Sharma kept a very close watch on Ivy, and within three months, believed surgery should be performed sooner rather than later.

“We thought it might be a few years before she needed it, but the defects were significant, in that they were impacting

her breathing,” said Amanda. “Dr. Sharma thought it should be done pretty quickly, and had her tests sent to Vanderbilt for a second opinion,” where Ivy’s corrective surgery was ultimately performed in April of 2020.

While many infants “recover within seven to 10 days,” Amanda said, “Ivy had some complications from the anesthesia, and we ended up being there with her for about a month.”

Additionally, she required supplemental oxygen 24 hours a day for about six months, then only at night for six months more.

“I was really glad she was our only child at that time, because really, I could pack her up, along with her oxygen, and we were good to go wherever we needed to,” her mother added, noting Ivy’s only lingering heart issue today is a leaky valve that might need to be addressed sometime in the future.

Amanda was comfortable in other ways, too, as a trained pulmonary nurse, so she had in her arsenal extensive knowledge and use of necessary tools — although she at first became alarmed at the pulse oximeter readouts.

“Dr. Sharma told us to turn off the machine, or it would freak me out,” she recalled. “So he told me to rely only subjective data, rather than that readout, and it really helped.”

She acknowledges today that overall concerns understandably lingered.

“Back in the 1950s. the life expectancy of Down Syndrome children averaged about 10 years,” she said. “Today, its 50 to 60 years plus. There are also many programs in place for Down children, from occupational therapy to speech, for example, and there is so much more known about it.”

Ivy has taken advantage of many of those therapies, including learning sign language early on, which has since been supplanted by an ever-bourgeoning vocabulary. She is also interacting more with children her age at Northshore Elementary School’s integrated preschool program.

“I have just seen her blossom ever since she started there,” said Amanda.

The family attends Fellowship Church in West Knoxville, which has a “Buddy Program” that pairs church members with special needs children.

“Miss Dawn is Ivy’s ‘Buddy,’” said Amanda. “Volunteers who are part of that program really are gifts from the Lord.

“It just helps show us how we are all God’s children — He created all of us exactly the way He wants us to be.”

Seeing how Ivy has flourished, whether its at home, at church, at ETCH as a Patient Ambassador, or taking part in the Down Syndrome Awareness Group’s annual October walk-a-thon, Amanda sees God’s consistent hand throughout Ivy’s young life.

“Looking back now, I wish I hadn’t worried so much,” she said. “Ivy is happy, growing, learning and loving, and she is so loved in return.

“Ivy is the greatest blessing we didn’t realized we needed.”