Family’s Miracle Baby Celebrates First Birthday After Long Fight Against Rare Genetic Condition

By Alyce Collins

 

 

AFTER being told their baby had little chance of survival past birth this couple refused to give up on their little miracle and they have since celebrated her FIRST BIRTHDAY, as she continues to amaze doctors with her strength.

 

School teacher, Haley Johnston (24) from Austin, Texas, USA, and her husband Dillon (25) suffered a miscarriage in January 2017, so when they discovered they were pregnant again a few months later, they decided to do a genetic test to find out if there was a possibility of miscarriage again.

 

At 13 weeks, a week after the genetic screening, Haley received a call to say that the test results highlighted that their unborn daughter had a high chance of having trisomy 18, which is also known as Edward’s Syndrome, a rare genetic condition which causes serious medical problems. Haley was subsequently informed that babies with trisomy 18 often don’t make it to birth due to the severity of the condition.

 

From then on, Haley and her daughter were closely monitored and an anatomy scan at 20-weeks revealed a hole in her heart, fluid in the back of her brain, microcephaly and clenched hands.

 

Haley wanted to give her daughter a fighting chance, despite the odds. At 27-weeks, the couple opted to do an amniocentesis to identify any chromosomal abnormalities and trisomy 18 was confirmed a week later. It was difficult for the couple to accept at first as Haley recalled how ‘perfect’ their daughter looked and they hoped it could be a false positive.

 

Haley was induced on February 15, 2018 at 39 weeks and six days. Unfortunately, during each contraction, the baby’s heart rate would drop, leading to the decision to do a caesarean.

 

Harper Johnston was born weighing 4lb 11oz and she was only three days old when she underwent her first surgery: a tracheoesophageal fistula repair. Since then, Harper has also undergone a gastrostomy tube placement, repeated oesophageal dilation, a heart catheter and open heart surgery. Everyone is amazed at how well Harper is progressing, and Haley hopes her daughter’s incredible journey can give hope that trisomy 18 is compatible with life.

 

“In January 2017, our first pregnancy ended in a miscarriage. We fell pregnant again a few months later,” said Haley.

 

“At 12 weeks, we decided to do the genetic screening to determine if the pregnancy would possibly end in a miscarriage and we also wanted to know the gender if, for some reason, something happened to the baby. We never found out the gender of our first baby, so if something did happen, we at least wanted to know the gender.

 

“We thought we were going to get great news. I mean, what were the chances of us having two miscarriages in a row?

 

“About a week later, we received a call saying our baby had a high possibility of having trisomy 18. The doctor told me she didn’t have good news. She said our baby had a high chance of having trisomy 18. The doctor 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’.

 

“I then hung up and called my husband and 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.

 

“We started seeing a maternal-foetal medicine doctor at 16 weeks for our ultrasounds. At our 20-week anatomy scan, our daughter showed several soft markers: a hole in her heart, fluid in the back of her brain, measuring small, clenched hands, HLHS, rocker-bottom feet, and microcephaly.

 

“The doctor talked to us about our options, including abortion. My husband and I are very open-minded. 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.

 

“We had another ultrasound at 24 weeks and 27 weeks. At our 27-week ultrasound, my daughter’s soft markers were gone. We thought that maybe she might have a different medical disorder since the genetic screening was positive. So, we decided to do an amniocentesis to have a more accurate answer.

 

“Even though the test results wouldn’t change our decision, we wanted the results to help us and the doctors prepare. The amniocentesis came back positive for trisomy 18.

 

“My husband and I were confused because Harper looked so perfect on the ultrasound. We researched false positives and of course there were a few cases. Maybe our amniocentesis was a false positive.”

 

Within her first 10 months of life, Harper had eight surgeries to improve her health, and she continues to impress doctors with her progress.

 

“When she was born, Harper had a tracheoesophageal fistula repair at three days old, a G-tube placement and oesophageal dilation at two months old, repeat oesophageal dilation at three months old and at four months old. Her last surgery was open heart surgery at 10 months old,” Haley said.

 

“She was in NICU for three weeks and then PICU for 10 days. All of her doctors remained optimistic. To this day, all our doctors are ecstatic about her progress in 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.”

 

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