Durban – Amy Miller is a 5-year-old who loves Katy Perry, spending time with her family, and watching cartoons.
But while most children her age live a carefree life, Amy might not have much left of hers – unless she receives a heart transplant.
She has had to deal with a burden most grown-ups would battle to cope with, surviving three open heart surgeries – having her first operation at six-days-old and the next when she was just four months.
Diagnosed with complex cardiac abnormalities, Amy’s mother Natasha says the battle began before her birth.
“At a routine scan when I was 20 weeks pregnant, we were told that our baby’s heart was not developing properly and that it would have to be watched closely,” she said.
One in a million
Amy’s doctor, Thanning Otto, said her only hope was a heart transplant. This was because of the complexity of her congenital cardiac anomalies.
“Presently she needs treatment for progressive heart failure. As a result of her cardiac condition she is unable to get enough oxygen into her circulating blood and is becoming cyanosed [turning blue]. She has developed a significantly progressive and irreversible cardiomyopathy [abnormal heart muscle],” Otto said.
Natasha Miller says her daughter is one in a million.
“I cannot explain what an extraordinary child she is. Her level of maturity and positivity inspires us all at home. She loves her music and loses herself in it. Her challenges in life have made her the most beautiful, loving soul.”
Miller says her life as a parent has become an emotional roller coaster.
“We know that Amy’s only hope of survival is a heart transplant. As a parent you want to pray for your child to survive, but in this case you are sort of dependent on a tragedy.
A chance to live this life
“We can never ever wish that upon anyone, but we are appealing and hoping that if the situation arises a family will give my daughter a chance to live this life.”
She does not know how she coped when told about her daughter’s condition.
“The first words I remember the doctor saying when she was born was ‘baby is struggling’ and they put her on my chest to hold for a couple of seconds before rushing her to neonatal ICU. Her hands were so blue and I was so scared to hold her, I didn’t know if that would be the last time I would hold my baby girl.”
The doctor told her husband it looked like the problem was inoperable and that he did not think there was anything they could do for her. Even after the doctors decided to operate, they could not say what Amy’s chances of surviving were.
“Imagine falling in love with this precious gift and not knowing how much time she has left on this earth,” Miller said.
“Every smile, every giggle and every hug is truly appreciated. Every day we wake up and thank God for our borrowed time with Amy. And yes, our heart breaks thinking of the worst but we cannot stop this, all we can do is pray for our girl, be the best parents we possibly can, say thanks for all the doctors and nurses, and be grateful for the enormous miracle and blessing that is our little girl.”
More information on Amy’s condition and how she can helped are available at: http://heartkids.co.za/
Amy Miller and her family. (Pictures supplied)