Harper Johnston was born with fluid in her brain, hole in her heart, and a rare genetic disorder.
She was given only a 5 percent chance of survival but she managed to beat the odds.
Dillon, 25, and partner Haley, 24, were so delighted when Harper came into their lives after they suffered a miscarriage in 2017.
But only 13 weeks into pregnancy, genetic screening showed that their unborn baby had a high risk of Edward’s Syndrome. It is a rare condition that often leads to stillbirth.
At 20 weeks, it was found that their unborn daughter had fluid in the back of her brain, clenched hands, and a hole in her heart.
Dillon and Haley wanted to give their daughter a chance, and now, after a complicated birth and numerous surgeries, their little angel is exceeding doctors’ expectations.
“No matter what, we wanted to give this baby a chance to fight,” Haley expressed. “To this day, all our doctors are ecstatic about her progress in life.”
Also known as trisomy 18, Edward’s Syndrome is a rare genetic condition caused by an error in cell division.
Fetuses with the condition have three copies of chromosome 18 instead of two. This means some body parts or organs do not fully develop.
75% of children with the condition survive only for 24 hours. 20% to 60% survive for seven days, 20% live for a month, 9% for half a year, and 5% for more than a year.
“The doctor told me she didn’t have good news. She said that babies with trisomy 18 typically do not make it to birth. I started crying,” Haley said.
“She told me not to Google it because of all of the horror stories.
“Before she hung up, I asked if it was a boy or girl and she said, ‘it’s a girl.’”
Haley continued: “I told him our baby was going to die. I was so emotionally distraught. He came straight home and… we started to Google trisomy 18.
“The doctor was right, we read all the dreadful stories about babies dying in the womb or shortly after birth.”
The doctor discussed other options, including abortion. But it wasn’t an option for Dillon and Haley.
“My husband and I are very open-minded,” Haley said. “We know that doctors have to give us all of our options. We told our doctor that we did not want to have an abortion. No matter what, we wanted to give this baby a chance to fight.
“The doctors were carefully optimistic. My husband and I remained optimistic, but we always knew in the back of our minds that anything could happen. Our doctors respected that.”
Harper Johnston was born at 39 weeks weighing 4lb 11 oz. She underwent her first surgery at only 3 days old.
Little Harper had a total of 8 surgeries during her first year of life.
Haley hopes that her child’s journey can also give hope that the condition is compatible with life. “Her health is great. Having heart surgery and closing the holes in her heart changed her health significantly. During Harper’s first year of life, we spent about a quarter of it in the hospital.”
She added: “I want to show that trisomy 18 is compatible with life. Medical professionals need to be aware that children with trisomy 18 can live a wonderful life.”
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