Jerry Davich
Metro columnist
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"Harley Margaret Hart gained her wings this evening at 5:09 PM."
This was the poignant social media post that immediately halted my world Saturday for a few minutes. I flashed back to June, 2016, when Harley's parents brought her into the world.
As Harley slept in a hospital's neonatal intensive care unit, John and Jill Hart grabbed lunch in the cafeteria and pondered their newborn daughter's future. Or, as they were warned, her lack of one.
"The nurses call her a miracle baby," John Hart told me while proudly sharing photos of her.
Harley was born prematurely with Trisomy 18, a chromosome disorder leaving her with three 18th chromosomes in a cell instead of the normal two. The extra chromosome results in congenital malformations and an unknown life span.
I knew nothing about the disorder at the time, and neither did Harley's parents.
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"We were told she would not be born alive and, if she did, she would have major birth defects," John explained.
The couple found out about Harley's disorder during Jill's pregnancy. After taking a test, they got a call from a doctor.
"Trisomy 18?" John asked.
"What's that?" Jill asked.
They had to Google it, something I did after meeting them.
Studies have shown that roughly half of babies carried to term will be born alive. If they do, most live only a few days. Roughly 90% of babies do not survive beyond the first year.
Also called Edwards syndrome, it's much more serious than the more commonly known trisomy 21, or Down syndrome. Developmental delays are typically more severe and the prognosis includes a much shorter life span.
No parent wants to hear this prognosis in a hospital nursery filled with normal, healthy babies.
"It was awful, with no hope offered and just worst-case scenarios," Jill recalled. "We were somewhat prepared for Down syndrome, but we had no idea about Trisomy 18."
From their first consultation with medical professionals, the couple received conflicting opinions on what they should do with their future bundle of joy. Some experts were supportive of their decision to keep their baby. Others suggested an abortion.
"We wanted everything possible done to keep her alive, unless she was not breathing and had no heartbeat," John told me at the time. "Trisomy is a diagnosis, not a prognosis. We're taking Harley home to live, not to die."
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Harley, who weighed three pounds, three ounces, not only had a heartbeat, she had a heart for living life to its fullest despite her many health obstacles, medical setbacks and personal challenges. Her personality sparkled. Her infectious smile beamed. Her laughs were contagious.
She loved to swing, travel, play with balloons, watch the trees sway in the breeze, feel the wind in her hair, splash in the water, snuggle with her father, and fall asleep in her mother's arms. She was loved as much as a child could be loved.
With Trisomy 18 babies, it's not what parents teach them in their shortened lives. It's what the babies teach their parents, I've learned. Love, patience, compassion, and the joy of each new day together -- "a profound learning experience of the heart," according to Trisomy.org.
Harley's parents created a special Facebook page titled "Harley's Epic Trisomy 18 Journey" to document every setback, every adventure, every key moment of Harley's extraordinary life. This is how I kept track of Harley's life year after year, with updated photos along the way.
More recently, those post updates turned serious, then gripping, from a hospital in Ann Arbor, Michigan.
"Through God's grace and Harley's stubbornness, we made it through the night, but her condition is tenuous. Please keep praying for her. Thank you," it stated Jan. 28.
Hundreds of posts since her birth went into great detail about her condition and all the medical details to keep her alive and happy. As I've learned with parents of special needs children, they quickly become experts in that field -- out of love, not occupation.
"Harley could not keep her oxygen levels up despite the oxygen at 100% and the ventilator pressures being high. Her lungs sound relatively clear, but are not oxygenating due to her pulmonary hypertension," John posted last Tuesday.
The next day, he posted, "I'm not going to sugarcoat it, yesterday was an awful day. Outcomes were not certain and we had to make some decisions that parents should not have to make."
Last Friday, a post stated, "Harley had deteriorated over night ... we made the decision to move forward with letting Harley rest. That decision did not come easy. Today has been a tear-filled rollercoaster. We cannot move forward in any direction right now with good conscience."
"We will let Harley guide us overnight."
The next day, this past Saturday, Harley died with her family by her side. She was 8 years old.
"She will always be an inspiration to others and will be forever our princess warrior," her obituary states. "Rest in Eternal Peace Peapod, we love you. You will be missed beyond measure."
I reached out to Harley's parents to share my condolences and to ask how they're doing.
"We're doing as well as can be expected. One minute we're laughing about a Harley anecdote, the next we're crying," John replied.
I asked him how they would have felt at her birth knowing that she would live almost to 9.
"We always had hope," he said.
"Harley had really blossomed into her own in the last several years. Maturing and developing her own unique personality. We are really devastated by her passing."
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Contact Jerry at [email protected]. Find him on Facebook and other socials. Opinions are those of the writer.
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Metro columnist
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