A girl born with a hole in her heart, fluid in her brain, and a rare genetic disorder has beaten the odds to celebrate her first birthday.
Harper Johnston is a glimmer of joy for parents Haley, 24, and Dillon, 25, who suffered a miscarriage in January 2017.
But just 13 weeks into the pregnancy, genetic screening revealed their unborn daughter had a high risk of Edward’s Syndrome, a rare genetic condition that often results in stillbirth.
And at 20 weeks, a scan revealed Harper had a hole in her heart, fluid in the back of her brain, microcephaly (an abnormally small head), and clenched hands.
Haley and Dillon, of Austin, Texas, were determined to give her a fighting chance, and now, after a complicated birth and eight surgeries, Harper is exceeding doctors’ expectations with a birthday they never thought she’d get to experience.
Harper Johnston (pictured, in her mother, Haley’s, arms, with her father, Dillon) was born with a hole in her heart and given just a five percent chance of survival. Despite the odds, Harper got to spend her first birthday with her family at their Austin, Texas home
‘No matter what, we wanted to give this baby a chance to fight,’ Haley said.
‘To this day, all our doctors are ecstatic about her progress in life.’
Edward’s Syndrome, also known as trisomy 18, is a condition caused by an error in cell division.
It is the second most common type of chromosomal disorder in fetuses after Down syndrome, making it one of the main disorders doctors are looking for in a genetic screening.
Fetuses with trisomy 18 have three copies of chromosome 18 – rather than two – due to receiving an extra chromosome from their mother or father.
It means some organs or body parts do not fully form, with fatal consequences.
Seventy-five percent of children with trisomy 18 survive for 24 hours.
Harper Johnston is a glimmer of joy for parents Haley, 24 (right), and Dillon, 25 (left), who suffered a miscarriage in January 2017. Pictured: during Haley’s pregnancy with Harper
Harper Johnston was born weighing 4lb 11oz (pictured) and, at just three days old, she underwent her first surgery: a tracheoesophageal fistula repair.
Twenty to 60 percent survive a week, 20 percent survive a month, nine percent for six months, and five percent for over a year.
Haley and Dillon were blindsided by the news.
‘We thought we were going to get great news,’ Haley said. ‘I mean, what were the chances of us having two miscarriages in a row?’
About a week later, they received a call saying their baby had a high possibility of having trisomy 18.
‘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.
‘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 called her husband.
Over the course of her short life, Harper has returned to the hospital often, undergoing eight surgeries to repair her heart and esophagus
The family was told not to expect Harper to see her first birthday. But, with many surgeries, treatments and close monitoring (right), Harper’s parents say she’s proof that ‘trisomy 18 is compatible with life’
‘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 talked to them about their options, including abortion.
For Haley and Dillon, that wasn’t an option.
‘My husband and I are very open-minded,’ Haley said.
Harper’s chest was bandaged after one of her heart surgeries (left). But the stay at the hospital was shorter than her other, Haley, had feared, and Harper has been home with her family since she was 10 days old
‘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.’
Haley was induced on February 15, 2018 at 39 weeks and six days. Unfortunately, during each contraction, the baby’s heart rate would drop, forcing doctors to perform a Cesarean.
Harper Johnston was born weighing 4lb 11oz and, at just three days old, she underwent her first surgery: a tracheoesophageal fistula repair.
It may take several surgeries, by Haley is proud that her daughter is proof that ‘children with trisomy 18 can have a wonderful life’
Since then, Harper has also undergone a gastrostomy tube placement, repeated esophageal dilation, a heart catheter and open heart surgery.
But her hospital stay was less extensive than they’d feared. She was in the NICU for three weeks and the PICU for 10 days, but since then she’s been home.
Their experience shines a light on the philosophical minefield of genetic screening – which aims to prevent the heartache of stillbirth and the pain of life-altering genetic conditions.
Haley hopes her daughter’s incredible journey can give hope that trisomy 18 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.
‘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.’