When Amelia was born in 2014, she was a healthy baby weighing nearly three kilos. When we got her home, she seemed alright but something felt off. I could tell she wasn’t feeling well, although at that point nothing obvious stood out.
I’m a theatre nurse by profession: I was trained in India where you get to do all types of nursing, so I had a little bit of paediatric experience—and I could tell something wasn’t right.
The doctor told me that she might be ‘tongue-tied’ (a condition which causes the baby to have physical problems accessing the mother’s breast milk). So I took her to the clinic after three days and they snipped her tongue. The nurse said it wasn’t too major and to just keep feeding her. So I did.
She would have died in her sleep a day or two later if you didn't bring her here.
But Amelia wasn’t putting on weight. I contacted the community health nurse who told me to top up (increase) her feeding, so I topped up. And, she still didn’t put on weight.
I couldn’t help but think, something was wrong.
Within a span of the next two-and-a-half weeks, I took Amelia to the doctor about five times. And still, no answer.
‘Your child needs surgery’
Then, one night while I was feeding her, I noticed there were pearls of sweat all over her body. Even though it was summer, my alarms bells went off.
My husband came back from work and he was looking after our two other two kids while I was feeding Amelia and I said, ‘I think we have to go to the hospital’.
The doctors eventually did an echo (echocardiogram) to monitor the heart waves and look at the physiology and anatomy of the heart.
They found Amelia had a coarctation of the aorta and told me: “your child needs surgery”.
The moment they uttered those words, I sort of blacked out, I couldn’t speak. I was just numb for the next three days. People kept telling me, ‘I’m so and so, I spoke with you yesterday’ and I’d say, ‘I’m so sorry, I don’t remember you.’
The doctor later told me that when I brought Amelia into the hospital, she was already in heart failure. Her heart had just kept trying to pump harder and harder but the blood output was very low.
“She would have died in her sleep a day or two later if you didn't bring her here,” he said.
I remember feeling so hopeless when he said that, all I could do was cry. I still couldn’t believe this was happening to my baby. Even though I was a nurse, I didn’t know that childhood heart disease was that common and I have no family history of heart disease.
I haven't seen a lot of kids with heart disease. In India, it’s mostly other deformities like spina bifida. So it was a real shock when I heard eight kids are born with heart disease every day around Australia and that my baby was one of them.
Even though she was so small, every time she heard my voice she would open her eyes - she could tell I was there every time I walked into the room.
Post-surgery
Amelia was in ICU for five-and-a-half weeks and then she was in the ward for a week. The doctors always thought she was going to pull through, but I never had that confidence: I didn’t think she was going to make it.
She was so pale and delicate, it just broke my heart every time I saw her. Her body was so small, you could see bones poking out everywhere. All you could see were her big eyes, everything else was covered in tubes.
I would sit with her in the ICU and do all the nappy changes and baths. I used to talk to her and give her lots of cuddles and say, “You’re so beautiful, mummy and daddy are looking out for you”.
Even though she was so small, every time she heard my voice she would open her eyes - she could tell I was there every time I walked into the room.
Recovery
After six weeks, we were able to take Amelia home.
We had nurses come to the house ever day to monitor her weight, she was still so tiny. It was massive milestone every time she gained weight, even if it was just 10 or 15 grams. I also had to keep monitoring the pulse in her legs. Her aorta was so small, she had no blood supply to her upper legs, so at first, one was smaller than the other.
Amelia had to have another surgery when she was ten months old, as the doctors found she had multiple (holes in the heart) as well as ASD ().
When you see other kids with heart disease and you talk to other parents, you realise there can be hope.
During this time and over the last three years, played a major role in helping me and my family. They put me in touch with other parents of children with heart disease. Just being with the same community and going through what everybody else is going through, it was just psychologically and emotionally very helpful. It made me and my family stronger.
These days, Amelia and my sons also go to a Heartkids playgroup and on camps with other families. Why? Well, when you see other kids with heart disease and you talk to other parents, you realise there can be hope.
Amelia’s future
We just had Amelia’s third birthday party. She’s grown into such a confident, bubbly kid. She does everything her older brothers do: she runs, rides her bike, climbs [structures] and hurts herself. But she’s very tolerant of pain, she just keeps going. She’s a tough little thing.
She isn’t really aware yet of what she went through as a little baby. But Amelia tells me she now knows what she wants to do with her life. She wants to be a cardiac surgeon when she grows up.
