Jill Hart wept as she yelled toward the heavens.
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“He better not (expletive) take her! She is not ready to go!” she said angrily in the family lounge at the University of Chicago Medicine Comer Children’s Hospital.
Hart’s sickly 1-year-old daughter, Harley, had just been intubated by hospital staff in a nearby room. Harley had reached her first birthday two months earlier – a milestone her parents feared would never happen – but it didn’t look like Harley would reach her second birthday. Or even the next day or hour.
Hart stayed an entire month at her baby girl’s bedside. Hart cried. She cheered. She hoped. She prayed.
“Harley is such a strong and determined little girl, full of love,” Hart said.
Harley was born June 23, 2016, 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.
If their frail, sickly baby could somehow make it to her first birthday, she could have a shot in life. That’s all her parents asked or prayed for – a shot.
“The nurses call her a miracle baby,” her father, John Hart, told me when we first met after Harley’s birth at St. Anthony Medical Center in Crown Point.
Trisomy 18, also called Edwards syndrome, is 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, with most babies not surviving their first year.
“We were told she would not be born alive and, if she did, she would have major birth defects,” explained John, who works at ArcelorMittal’s Burns Harbor plant.
Harley had serious birth defects, developmental delays, and related health complications. Her parents learned how to deal with these problems on the fly, after they brought Harley back to their Cedar Lake home.
I’ve been keeping tabs on Harley since her birth. Her mini-milestones. Her hospital stays. Her medical treatments. Her health scares. Her brushes with death.
“We may get a year, we may get 30 years, we just don’t know,” John Hart told me last month, with Harley’s second birthday a real possibility. “We live and enjoy our time with Harley to the fullest.”
After Harley’s birth, John and Jill comforted each other through tears every time they talked about their baby’s future. Or, quite possibly, her lack of one.
“It’s still hard for us to talk about it,” John told me. “Our daughter’s health will always be precarious. It’s hard to come to terms with that fact.”
I think of Harley when I read about those troubled souls who commit suicide, sadly making the ultimate, irreversible decision about this wondrous miracle called life. They tragically choose to end theirs as Harley struggles to cling to hers.
I also think of Harley when I read about freak accidents taking the lives of people who, unlike with suicide victims, never saw death coming.
Just last week, a 66-year-old woman riding in a taxi was killed after the driver of a stolen Jeep, who was allegedly fleeing police, struck the cab in Chicago’s River North neighborhood. One minute she was likely reflecting on the live performance she had just watched at a theater. The next minute, she was gone.
Many of us routinely presume we will wake the next day, or we will live the next few years (or decades) without incident or injury. Most days, I feel this way, too. But, as I’ve come to realize possibly due to my job or my age, or both, life can be so fragile, so delicate, so endangered.
With this in mind, I try to view life itself as if it is Harley Hart.
Frail. Tender. Precious.
“Despite Harley’s numerous challenges, she is very happy,” her father told me. “She almost always has a smile on her face.”
When Harley turned 1, she reached a milestone in the Trisomy 18 community. Long-term survival rates stabilize if a “T-18” child makes it to 1 year old.
“We thought for a minute we were in the clear,” John said. “We had a false sense of security.”
On Aug. 4, 2017, Harley became seriously ill and was transported to Comer Children’s Hospital in Chicago. She was admitted with acute respiratory distress syndrome and had to be intubated for more than two weeks. Doctors didn’t know if she would survive.
“She recovered fully,” John told me afterward. “We did not.”
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Meaning that he and Jill cannot take any day of Harley’s life for granted. Not one day.
Last October, Harley had a heart problem medically repaired. In April, she had her second mandibular distraction surgery, a procedure to lengthen her lower jaw so her tongue didn’t block her airway.
Harley receives oxygen 24 hours a day through nasal tubing, though doctors are unsure why she still needs it, her parents said.
“We will soon be seeing our third pulmonologist to try and figure this out,” John said.
“Harley is strong and determined,” Jill added.
“She is developmentally delayed but is making steady progress,” John said.
“She pulls through to be her happy self in the end,” Jill said.
Harley can now lift her head on her own.
“If placed in a sitting position, she can balance for as long as four minutes,” John said proudly.
It’s one of those mini-milestones I mentioned.
Harley receives multiple therapies each week. And regular visits to specialists.
“It never gets easier handing her over to surgeons,” Jill said.
Harley loves to interact with her mommy and daddy. She loves to be tickled. She loves boat rides, being outdoors and being around other children, especially little girls.
On Saturday, Harley reached another major milestone. She turned 2.
Her proud, thankful parents hosted a big party. Cake, ice cream, guests, the birthday song. Harley even rode a pony as her mother held her.
“Even with sleepless nights, all I can do is stare at her and be in awe how lucky we are to still have her,” Jill said.