An Auckland couple who lost their 4-month-old daughter to a rare congenital disorder have welcomed a baby boy this Christmas. Video / Sylvie Whinray
Michele Roxo and Nicolas Zubok’s daughter Iris died aged 4 months in August last year from ailments related to Kabuki Syndrome.
The couple spoke publicly about her death because they wanted to support others facing child illness or loss, especially from rare conditions.
The couple and their surviving daughter have celebrated the arrival of new life just before Christmas, with the birth of ‘rainbow baby’ Noah.
An Auckland couple who lost their 4-month-old daughter to a rare gene mutation syndrome - and then bravely went public about her death to support others facing child illness or loss - have welcomed a baby boy this Christmas.
Little Noah is their “rainbow baby”, and his safe arrival last Tuesday is their “Christmas gift” Nicolas Zubok and Michele Roxo told the Herald.
The healthy 3.13kg (6lb 14oz) baby’s birth had brought “happiness and relief”, and was something Zubok hoped would lift people’s spirits this Christmas.
“If we can bring a happy and joyful story on Christmas Eve, that’s what we want to do.”
Roxo was also doing well following the birth, with mum and baby home a day later, Zubok said.
The rainbow reference to their third child acknowledged the sister who died before he was born.
“People say that every time they have a baby after the one that passed, they call it a rainbow baby.
“I’m not religious, but I believe in spirits… I think maybe [Noah] is a gift to us, like God, or whoever you think is the Almighty, so after everything we went through, and how strong we are, and then I think it’s just like [God] deciding to send another one to complete the family.
“And we’ll always be a family with three kids, even if one is not around.”
Nicolas Zubok and Michele with their son Noah, who they call their 'rainbow baby'. Also pictured is his older sister Eva and a keepsake of their second daughter, Iris who died last year. Photo / Sylvie Whinray
The Te Atatū Peninsula couple were already parents to Eva, now 3, when their second daughter Iris was born in March last year, arriving with a number of health issues from heart and kidney defects to skeletal anomalies and blindness that were later attributed to the rare Kabuki Syndrome.
Two months later, the newborn was able to spend three precious weeks at home, but was later readmitted to hospital and died in her parents’ arms on August 5.
Speaking publicly about their loss and offering support to other parents facing child illness or grief was Iris’ legacy, they said, when talking to the Herald in February.
“She came to this world for a purpose.”
That purpose was already in action with their involvement in creating a Kabuki Syndrome New Zealand Facebook group, and offering words of encouragement to a family considering having another child after losing one to a heart condition.
“[They wanted someone] to understand how hard it was to get pregnant again, and what the feeling is… [It’s about] bringing some hope and joy to families that are suffering right now.”
On December 17th Michele Roxo gave birth to their son Noah, who they are calling their 'rainbow baby'. Photo / Sylvie Whinray
Noah’s conception - unplanned but welcomed - showed “life goes on” - something that brought hope but was in no way about “replacing” Iris, Zubok said.
“Your kid, when they pass, they’ll always be around you. But we need to keep going, especially if we have other kids.
“I’m not saying it’s easy for us… but we don’t want to live in a sad environment, or be a sad family. Life goes on.”
There was peace knowing they’d done all they could for Iris, he said.
“Of course we miss her, but we tried everything.”
Eva Roxo Zubok, then aged 2, with her baby sister Iris Roxo Zubok, then aged 2 months pictured before Iris' death aged 4 months in August 2023 from complications relating to Kabuki Syndrome. Photo / Supplied
The family keep Iris’ memory alive with photos, keepsakes and by talking about her every day.
She also remains part of Eva’s bedtime routine - along with her new brother.
“Every night we say, ‘Night night, Eva, night night Iris, night night Noah, night night Mummy, night night Dad’. We say all five names.
“We want to keep her memory alive in a good way. I know people sometimes don’t like to talk about death, but I think it’s a good way to remember the beloved ones.”
Their family was now complete, Roxo told the Herald.
“We have two girls and a boy, and it doesn’t matter if Iris isn’t here with us - present - because she’s always with us.
“Of course we miss her, but now we have a focus on the new baby as well… especially because it’s Christmas. He’s like a Christmas gift for us.”
Cherie Howie is an Auckland-based reporter who joined the Herald in 2011. She has been a journalist for more than 20 years and specialises in general news and features.
