Meet bubbly Arielle, the little ambassador for the 2018 Good Friday Appeal.
When you’re around four-year-old Arielle, you can’t help but smile – she’s bright, bubbly, and full of energy!
It’s hard to imagine her parents were once preparing to say goodbye to her forever.
In 2013, at 38 weeks pregnant, after a normal pregnancy, Arielle’s mum, Genevieve, was told there was something wrong with her baby girl’s heart. Arielle was delivered two weeks later by caesarean. Doctors were puzzled and unsure what was wrong with her so she was immediately transferred 30kms away to the Royal Children’s Hospital, separating mother and daughter for the next four days.
“By day two, I just wanted to leap out and be with her. I wanted to hold her but I couldn’t, she was hooked up to so many machines and tubes. Despite that, my mother’s instinct told me she was going to be ok. Whenever she heard my voice, she would look up to me,” Genevieve said.
There were multiple tests that spanned more than a week. It was finally revealed that the left side of Arielle’s heart wasn’t doing anything and Genevieve, and her husband, Carl, were told to prepare for the worst. At that time, a heart transplant wasn’t on the table nor had it ever been performed on a child that young.
Arielle was baptised in preparation for her family to say goodbye.
But then things turned.
The following day, she had a slight improvement so the Cardiology team decided to hook her up to a Berlin Heart, a device that helps the right ventricle of the heart to pump blood to the lungs and the left ventricle to pump blood to the body. Again, a child that young, just two weeks old, had never been fitted with such device.
It was a decision by RCH specialists, and a mother’s perseverance, that paid off. At just five-months-old Arielle received a heart transplant, making her the youngest ever recipient.
“I was so excited, I couldn’t stop crying. But you do think of the other children still waiting, and of course, the donor family. I pray for them every day, and if I could just say one thing it would be thank you, thank you for giving my daughter another chance at life. We are just so fortunate she is still here with us,”Genevieve said
Arielle was discharged from hospital three months later, and decade-plus relationship with the RCH began. Organ rejection, high infection-risk and low immune systems are the reality following transplant, which is why continued, close follow-up appointments at the RCH every three months is required.
“It’s been up and down because she is prone to infection, especially in winter months. You have to be careful in public, but she’s slowly building up her immune system. We visit the RCH every three months for check-ups but if she’s unwell we’re straight on the phone to our RCH team to get advice,” Genevieve said.
Arielle will remain under the care of the RCH until she transitions into adult care.
“Thank you so much to the RCH team for giving us back our girl. She’s such a giving little girl and we cherish her every day. Had she been born in my home country, Seychelles, she never would have survived. With the amazing technology and research, I can’t fault it [The RCH]…”Genevieve said
She’s so full of life, she doesn’t stop talking, and even when she’s unwell she’ll still get up and move around. She’s my little hero, I look at her every day and wonder how she does it. She’s inspiring,” Genevieve added.
Posted March 28, 2018