Johannesburg - Up until 10 weeks ago, five-year-old Amy Miller was having a normal childhood – well, as normal as a childhood can be for someone born with a congenital heart defect.
Doctors had discounted her chances of surviving out of her mother Natasha’s uterus but she defied the odds after nine-hour open-heart surgery at only six days old.
However, Amy now faces a new battle to survive. She is tired, and so is her heart. She needs a heart transplant.
Rewind five years, when her parents were excited to hear that they were expecting their first child.
But what was meant to be a routine scan on her mother’s 20-week pregnancy mark revealed something her parents hadn’t anticipated, let alone even thought was possible.
“I remember the doctor going really quiet… he said it looked like something but they couldn’t be sure.
“He asked me to take a walk and come back because the baby was sitting in a position which was difficult to read.
“When we came back, another scan showed her left ventricle wasn’t developing like her right one,” her mother said on Tuesday.
The defect is known as hypoplastic left heart syndrome, and affects normal blood flow through the heart.
At the 36-week mark, Natasha – who currently lives with her husband Mike and two daughters in Durban – drove with Mike to Sunninghill Hospital in Sandton.
Then they had to drive from there to Cape Town’s Christiaan Barnard Memorial Hospital, where Amy was born.
“The first words I remember the doctor saying were: ‘the baby is struggling’, and they put her on my chest to hold for a couple of seconds before rushing her to the neonatal ICU. Her hands were so blue, I was scared to hold her; I didn’t know if that would be the last time I’d hold my baby girl,” 36-year-old Natasha said.
Amy had the surgery done six days later – had she not, she would surely have died, as the syndrome, if left untreated, is 100 percent fatal.
She was in hospital for 45 days after her first operation. Her second operation had to be done sooner than hoped for, at four months old, because her aorta collapsed and had to be reconstructed.
She had more surgery at two. In total, Amy has survived three reversed heart failures.
Since then, her mother said she has had a “good couple of years”. But her condition has started to deteriorate.
“Yesterday, I was happy because it was her two-week mark out of hospital, but today she isn’t feeling well. It’s heartbreaking, but most of the time we can keep our focus,” Natasha said.
Amy needs a new heart, but the donor pool is small.
“The problem is that she’s a child. It’s a more difficult and emotive thing for parents to decide when their child dies to donate their heart. All we can do is raise awareness on organ donation – say: ‘What would you do if it were your child needing a heart?”’
Amy’s parents have started a campaign on Facebook called #AnewheartforAmy.
To find out more about organ donation and how to help other families going through the same thing, go to www.heartkids.co.za
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