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Living with trisomy 18: How a 6-year-old girl is beating the odds

Trisomy 18 typically results in life-threatening complications for a baby, but one little girl, Georgia, is proof of how one can live with it.
Living with trisomy 18: How a 6-year-old girl is beating the odds
Posted at 1:16 PM, Dec 21, 2023
and last updated 2023-12-22 09:03:11-05

This is, first and foremost, a love story ... about a mother and her unbreakable bond with her daughter, who is just like any other 6-year-old girl.

You can see the love in the way Kimberly Minor understands her daughter, Georgia, even though she can't speak.

She's still sweet — and a little bit sassy — and a rare survivor living with a life-threatening genetic condition known as trisomy 18 in which a body makes an extra copy of chromosome 18, typically resulting in low birth weight, clenched fists and congenital heart defects.

Dr. Jeffrey Dungan, a gynecologist with Northwestern Medicine, says children born with trisomy 18 also "frequently have central nervous system abnormalities and have generally fairly severe cognitive issues," while others are born with cleft lips and palates, along with gastrointestinal and kidney malformations.

It's the same condition at the heart of a historic abortion case in Texas that captured headlines: Kate Cox decided to end her pregnancy after facing health complications and learning her unborn child had full trisomy 18, leaving a slim chance of survival. Cox petitioned for an exemption to the state's near-total abortion ban but was denied, forcing her to leave Texas to get the procedure.

SEE MORE: Woman seeks out-of-state abortion as Texas top court rules against her

As for Kimberly and her husband Patrick, Georgia's condition was a total surprise. Their doctors had told them throughout the entire pregnancy their baby girl was healthy, all while Kimberly worked 80 hours a week as a restaurant manager at a Hooters in the Atlanta area.

But Georgia's traumatic birth changed everything.

After Georgia's heart rate plummeted during labor, Kimberly was rushed into the operating room for delivery. But unbeknownst to her at the time, Georgia was born not breathing and half the size she should have been, clocking in at a mere 4 1/2 pounds.

"They go to pull her out and the entire room goes quiet," Kimberly told Scripps News, detailing the terrifying delivery. "It's like if you walk in a party and you know that everybody was talking about you."

The surprises that day were seemingly endless for Kimberly and her husband, who were later told that Georgia also had three congenital heart defects, and Kimberly later read in Georgia's medical records that her newborn was at risk of heart failure.

Kimberly pressed for genetic testing, and Georgia wasn't diagnosed until weeks after she was born.

"The pediatrician's office had the receptionist call us to tell us that she tested positive for trisomy 18, and when I asked what it was, she told me to Google it," Kimberly said.

What she found terrified her.

"Eighty-five percent don't even survive birth, that most don't walk or talk or eat, that they have tons of deformities, and they are basically vegetables that have no emotions or feelings," Kimberly said.

Doctors told Kimberly and Patrick that 90% of children with the condition die by their first birthday, leaving Georgia's parents in a state of constant fear.

"That first year of her life, I was just constantly scared I was going to just pull over and she'd be dead in the back seat or wake up in the morning and she'd be dead in her crib," Kimberly said. "But then she lived and she kept living."

Dr. Dungan says life with trisomy 18 ranges in difficulty depending on the type babies have.

"If there's mosaic trisomy 18 and the structural issues are not as severe as they are with full trisomy 18, then then the outcome can be a little less predictable because, again, it depends on what kind of interventions are needed to help the child survive and thrive," Dungan said.

But Georgia is beating the odds and even using a walker after being told she'd never put one foot in front of another.

SEE MORE: Genetic testing spurs revolution in preventive care

To say it hasn't been easy getting Georgia the care she needs is an understatement, with Kimberly saying doctors kept denying her services afforded to other special needs children.

"For the longest time, kids with trisomy 18 were denied lifesaving interventions based on this idea that they were incompatible with life, which then shows ... guess what? They're incompatible with life because nobody's providing lifesaving interventions," Kimberly said.

Private insurance only covers a chunk of Georgia's needs and she only qualified for a couple of government assistance programs. She was also denied Medicare aid at least three times before the state conceded, and still, Kimberly felt doctors in the area weren't going to help Georgia thrive.

Now every three months or so, the family travels to Cincinnati for all of Georgia's medical care. Their aggressive strategy is paying off nearly seven years after Georgia was born, and Kimberly says taking care of her daughter is just like being any other "soccer mom."

"If you swapped out sports for, like, therapies, that would be pretty much the equivalent of instead of a soccer mom," she laughed. "I'm a therapy mom and drive all over the place for different therapies at different times. But she goes to school with other kids her age and she does cheerleading, she does dance, all kinds of fun stuff."

A couple of hours a week, Kimberly and physical therapists at Kids in Motion, located outside Atlanta, help Georgia learn to walk, while speech therapists help Georgia use a computer that tracks her eye movements to help her communicate.

They're waiting for a new one, which costs $10,000.

It's just one of the many expenses that come with Georgia's care, with the family initially relying on GoFundMe and food and clothing donations to make it day by day.

Kimberly eventually became a professional photographer and can build her schedule around Georgia's care while her husband works full-time.

And now that Georgia is seemingly through the worst of the storm, they're taking time to have some fun.

"She loves to go camping. She's got her dogs. She's obsessed with them. And in a lot of ways, she's living a better life, probably, than a typical 6-year-old because she's spoiled rotten every day of her life," Kimberly said with a smile.

SEE MORE: Woman gives birth to 14.5-pound baby boy

Dr. Dungan says Georgia is a rare case and encourages parents who get the diagnosis to weigh their options.

"They should feel like they have as much information and data and feel supported in their decision, and if they're not getting that at the center they started at, they should find somewhere else to be taken care of," he said.

Kimberly can't deny trisomy 18 brings about a world of pain, with a majority of babies never making it to term while many of those who do often die young.

She and Georgia honor their lives by putting their faces on a special Christmas tree in Georgia's bedroom.

"They're the kids I found when I needed to find hope," said Kimberly. "And then when those kids pass, you're like, oh, it's not always safe. It's not always secure. You might not always have them forever," she said.

In the wake of Kate Cox's case, Kimberly says she's pro-choice, but she wants people to see the diagnosis creates another world, of love and empathy, where every step forward is magic.

"There are kids that don't survive, but there are those that do, and it's not fair to just write off every version of that case," pointing to other cases, like a 36-year-old who travels the country as a motivational speaker or a teenage girl playing kicker on her high school football team.

"You don't have the option to quit. There's just not an option there," Kimberly said. "And if Georgia can wake up every day and be like, 'Hey, I can't even get out of this bed by myself, but I'm still gonna give it my best shot,' then there's no excuse for me to sit there and be a victim or believe that we got a bad hand."

If you're a parent whose child also has trisomy 18, Kimberly and Georgia would love to hear from you on their Facebook or Instagram pages.


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