'We were told to terminate': Sydney couple's huge decision after discovery during early pregnancy scan
By Jo Abi|
Joanna and Paul Harb received the news no parent expects to hear when they were advised their unborn child should be terminated.
The Sydney mum, 33, tells 9Honey the conversation took place during her 20-week pregnancy scan.
"We were excited to find out what we were having, and the scan went long and the doctor wasn't saying much," she says.
"When they told us we were having a daughter and she had a congenital heart condition, among other things, I just died."
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The private hospital doctor said he could "see a few defects" in the baby's heart and recommended termination.
But Joanna and Paul, 39, weren't willing accept this. Instead, they changed doctors and, under the care of a team of medical professionals at their local public hospital in Sydney, a plan was put in place to save their daughter's life.
The couple were parents to Veronica, then 14 months old, and had been looking forward to giving her a sibling.
"It was like I was in denial for a while. I couldn't believe it. She didn't have one problem, she had five," Joanna says.
The baby, who they named Azariah, not only had a heart condition, but also there was a problem with her kidneys and she had a cord defect.
"Throughout the pregnancy I refused invasive testing. I decided to go to term and see what happened," Joanna says.
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When Azariah was born, they were transferred to Sydney's Westmead hospital, where she had her first surgery at six days old.
Giving birth to a medically compromised child was terrifying for Joanna.
"My spinal didn't work and I was having a c-section, so they knocked me out. Then I woke up in recovery and I had no baby, no husband, no phone," she says.
"Apparently she was born blue and needed oxygen and support. They stabilised her and gave her a drug to open her heart ducts."
Her daughter's heart was the "size of a strawberry" during that first surgery, which took 10 hours.
"The surgeon who did it is a professor and he did a remarkable job. When he came out to see us, he told us our daughter had challenged him. At one point he thought it wouldn't work, but they got there in the end," Joanna says.
Still, Azariah wasn't out of the woods. It was a case of taking each hour as it came.
When Joanna and Paul first saw their daughter following her surgery, her chest was still open to allow for quick access if needed จC and it was needed, many times.
"When you see your child after heart surgery, it's very confronting," Joanna says.
"She looked swollen, there were so many cords and things coming out of her body. She had an open chest. There was no cuddling, no breastfeeding, nothing. We couldn't touch her or lift her.
"She was on a ventilator and spent four weeks in ICU [Intensive Care Unit]. There were quite a lot of post-op problems. They couldn't take her off the ventilator and she kept crashing.
"They did multiple tests but I think she just needed time. She was very fragile. Sometimes it was one step forward and two steps back."
Joanna describes how difficult it was for her and Paul to go home without their baby, saying they were "torn between home and hospital life".
In the end, Azariah was in hospital for two months before she was allowed to go home.
"She had to come off the meds and was having morphine withdrawals, and the symptoms were rough," Joanna says.
Azariah's second operation took place when she was four months.
"This surgery was quite cruisy compared to the first," she continues.
"That time, she was in hospital for six or seven days, nut there was a lot of trauma for us to get over what had happened. It was really tough.
"Then they discovered she had gallstones in her bladder at 18 months, which is rare at her age, so they had to be removed."
From four months of age, Joanna says her daughter's condition has been "pretty stable".
"I couldn't work for three years, it has been very full on for our family," Joanna says.
"Now I work as a family support coordinator in a hospital. I started volunteering after what happened to Azariah, to give back."
Joanna explains she supports families with children who are going through heart surgery.
"As soon as you meet a 'heart mum' you connect on a different level. They know I've been in the chair they are in," she says.
Joanna is sharing her family's story for Hero For HeartKids Day on June 17, an opportunity to support the thousands of brave children who are living with the life-threatening challenges of congenital heart disease (CHD), which is one the biggest causes of death in Australian babies.
Those who survive, like Azariah, now three-and-a-half, often undergo corrective procedures for years.
"Azariah will have her next in September or October," Joanna says.
"They are doing some tests now to make sure she is ready. It is more challenging now that she is a toddler.
"We were always told as a baby it is easier, but now she knows what is going on. It can be quite traumatic."
The Harb family is encouraging everyone to show support for kids living with a heart defect (CHD), this June 17, 2022, for Hero For HeartKids, which encourages people from all walks of life to dress up in their favourite superhero costume or participate in a variety of superhero activities, including special superhero challenges.?
To Be A Hero For HeartKids, superheroes are encouraged to create a fundraising page for their colleagues, friends, family, and community to donate to.?To join the fight against CHD, visit? https://www.hero4heartkids.org.au/ and register or donate.??
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