This is Ezabella. She likes butterflies and The Wiggles and saying ‘hi’ to everyone she meets. The little sweetheart, with a smile that anyone who ever met her is unlikely to forget, had just learnt to sit up and move around when a different kind of milestone came calling – one that no parent ever wants for their child. She became one of Australia’s youngest organ donors, after a rare illness claimed her life the day after Christmas. This is her story.
Naomi Wilson and partner Nick Paul thought theirs was just a normal, healthy pregnancy until the 20 week scan revealed some rare abnormalities. After many tests the Canberra couple learnt their longed-for baby had a chromosome deletion, where part of the sixth chromosome was missing.
“We hadn’t heard of it, it was all completely new to us,” a still grieving Naomi tells Babyology. Doctors hadn’t dealt with Ezabella’s condition before, either.
“When we were called in to discuss the results of the amniocentesis we walked into a board room where six specialists were waiting. It was all new to them,” Naomi remembers.
What those doctors revealed was shattering – they warned Naomi to expect brain abnormalities, developmental issues and dysmorphic features for the baby growing inside her.
And indeed, baby Ezabella was born with some significant brain abnormalities, a TOF/OA (tracheoesophageal fistula/oesophageal atresia) so she was unable to swallow, developmental delays and a host of smaller issues. She was also born with a spark so bright that you couldn’t help but fall in love.
The family moved to Melbourne from Canberra five months ago to be closer to the Royal Children’s Hospital for Ezabella’s care and treatment.
But it just wasn’t how things were meant to be.
“There’s a quite famous poem called Welcome to Holland, we were actually given it to read by our obstetrician and it describes pregnancy as planning a trip to Italy and winding up in Holland instead,” says Naomi.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
There’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
Ezabella was “amazing, a little fighter”, despite having her first surgery within hours of being born. She was behind on her milestones but a very happy little baby.
“She was so extremely sick but often had the biggest grin on her face,” Naomi says. “At one stage she had a shunt put in her brain to release the pressure and we were told adults don’t even deal well with that surgery, but Bella was so brave and never complained. Everything happening to her was causing her so much discomfort, but she was still happy.”
Ezabella loved music. Hush, little baby was her favourite lullaby “by far”, but it was the colour and amusement of The Wiggles that brought her joy too, her mum says. “She was in hospital a lot so watched a lot of Wiggles on portable DVD. It came everywhere, she’d lay there and watch it, she loved it.”
The determined little girl couldn’t walk yet, but had learnt to roll over and was efficiently getting around. “I’d turn my back and she was on the other side of room. She could sit and shuffle her legs around to face any direction,” Naomi recalls.
“She only every said one word, ‘hi!’, but it was a powerful one. She would say hi to everybody and everyone would say hi to her, she even said hi to a team of doctors – she was a social little girl.”
On December 23, Ezabella’s health suddenly deteriorated and “we were aware things weren’t fantastic”, Naomi says. “The Royal Children’s Hospital told us rather bluntly that it was unlikely she would survive.”
Doctors declared Bella, 18 months old, brain dead on December 26, 2015. Her parents, both potential organ donors, made the decision to try to make a difference to the lives of other children. “We decided to donate her organs if she could. It wasn’t even something we had to think about to be honest,” Naomi says.
Their little girl’s “heart was perfect” and suitable for organ donation. The family has just received a letter to say a little boy has received Ezabella’s heart and is recovering well. “She had such a big heart, it’s so fitting,” says Naomi. “The fact her heart is still beating is amazing to me.”
An autopsy has been performed and the family is waiting for the report from the Victorian Coroner as to their daughter’s sudden decline in health. But research into Bella’s disorder is underfunded and limited – and her parents want this to change. Naomi and Nick are bravely campaigning during the toughest days of their lives for more research to save other babies diagnosed with the same deadly conditions.
Ezabella’s siblings are coping, Naomi says. Joshua, 10, is missing his little sister and Alexis, 4 months, will learn about her beautiful sister through photographs and videos. “It would be much harder to live with this without my other children,” Naomi says.
The family will release butterflies at Ezabella’s memorial this Sunday and do it every year to honour their happy little girl. “She lost it in the Butterfly House at the zoo,” Naomi remembers fondly. “They were her happy, they were her calm.”
(Images via Naomi Wilson)