Proud dad Sunia with his little girl Honor, who was born with a cleft lip and cleft palate. Photo / Supplied
Proud dad Sunia with his little girl Honor, who was born with a cleft lip and cleft palate. Photo / Supplied
Kintsugi is the Japanese art of putting broken pottery pieces back together with gold.
The art can be used as a metaphor in life, to embrace what makes us different, imperfect, and the beauty of scars after healing.
Stacey-Anne is the mother of Honor, a 3-year-old girl born with acleft lip and cleft palate, and who references kintsugi when she shares about her daughter's cleft journey.
"Some people look at you - beautiful girl - and see a face that needs to be fixed. But not me.
'I want to encourage our Pasifika families...there is support'
"To me you are perfection...and with your beautiful, big smile you have captured my heart," the proud mum wrote online before her little girl's first lip surgery, when she was just 4 months old.
Dad Sunia said before Honor was born, neither family had experience with cleft babies.
Sunia, who is of Tongan descent, empathises with other Pasifika families who are navigating their child's cleft journey, with the weight of religion and superstition.
"Some of them may feel like they're cursed, for some reason. They might think that the parents have done something wrong because our culture is quite religious.
"Oftentimes if they can't understand something, they fear it.
"I just want to encourage our Pasifika families - in particular our Tongan families - that there is support out there for them. There are other families who are walking this journey."
In New Zealand, one in 700 babies are born with a cleft lip or cleft palate (the roof of the mouth), which is caused by the failure of developmental segments of the face to join up, according to Cleft New Zealand, an organisation that has supported affected Kiwi families since the 1970s.
The exact cause for these conditions is not entirely known. However, there is a general view that it is a combination of genetic and environmental factors.
Proud dad Sunia with his little girl Honor, who was born with a cleft lip and cleft palate. Photo / Supplied
Cleft NZ spokeswoman Genevieve Boyer said: "The roof of your mouth prevents fluid from going into the nose and air escaping out of the nose. A child can live and breathe, but will have difficulty with feeding and speech.
"The cleft can sometimes extend out and affect the gums and also the lip. Sometimes it can go further and affect the nose.
"The lip is split, so that means the baby won't be able to suck, won't be able to talk and form sounds properly so there are initial repairs from a young age to enable feeding and speech."
Boyer said that if there is a cleft lip, it is usually repaired early on - when a child is between 3 months and 6 months old.
"Palate repair is usually done by a plastic surgeon at the hospital. It's quite a big operation.
"When you come to repair the palate, that's usually done between 10 months and 1 year old. That's to help with the development of speech and to help food stay in the mouth."
Other difficulties that cleft babies may experience are hearing loss, dental problems and, as they get older, they may need ongoing speech therapy.
The cleft journey can be life-long; with some requiring further surgeries well into adulthood and the experiences of each person affected by cleft lip and or palate will vary.
A miracle baby
Another family walking the same cleft journey are Kym and Kevin, whose 4-month-old daughter Bobbi-Lee has just had her first surgery on her nose and lip.
The parents found out about their child's cleft lip condition at a scan in week 23 of Kym's pregnancy.
Bobbi-Lee's cleft lip was picked up in a scan during her mum Kym's pregnancy. Photo / Supplied
Neither knew what cleft lip was and learned through the hospital's cleft team and an online support group.
"She was a miracle baby, as it was never thought I was going to get pregnant. No one wants a little baby having a hard start to life, but I don't think it's affected her so much," mum Kym said.
"It's probably affected us more - worrying about her going into an operation or how she will be on the other side being like a completely different looking baby.
"She's happy. I think that's the main thing."
Speaking about the surgical work available for children affected by cleft palate or a cleft lip, Kym described the work as "phenomenal".
That work, as well as other services, procedures and therapies for cleft are dependent on where you live in New Zealand, however.
Little Bobbi-Lee shows off a big smile after having her first surgery on her nose and lip. Photo / Supplied
Boyer said it would be good if there were psychology services involved and more access to speech therapy.
In Dunedin, for example, it is not a plastic surgeon but an ear, nose and throat surgeon.
"So there are different services depending on what hospital you go to. It's a bit of a postcode lottery as to which centre you're with, what they offer and what kind of support they have."
Both Honor and Bobbi-Lee's parents and families continue to be supported through Cleft NZ.
The night before Honor's sixth procedure, Sunia and Stacey-Anne told the Herald how their daughter was named, in celebration of her life and as a reminder of her parent's love.
"We are honoured to be her parents and we know her life is going to be a life of honour. We just wanted her to always know that.
"There's no shame around her life and we want her to be proud of her journey because it all shows how brave, resilient and amazing she is.
"She's still just a normal little 3-year-old girl who loves singing and dancing and twirling and climbing trees. We're so thankful for her journey and that we were chosen to help and guide her."
I read somewhere once of the Japanese art of kintsugi, the practise of taking a broken vessel and filling in the cracks with gold because it's often in these broken pieces that unique beauty is found.
I've gotta tell you, this journey - like this vessel - broken though it may have seemed in the beginning, is being filled with gold.
There is so much I could write here, how incredibly resilient these babies are. How it has been so much harder than I could've imagined.
How it's brought so much more joy than I could have ever dreamt. How milestones that aren't even milestones for most babies are the biggest of victories.
The pride, the fear, the relief, the support, feeling utterly alone and then knowing that you're never alone.
And awareness is important. It's important because it's powerful. If being aware can help another person in their own journey that's powerful!
If it can help someone understand that a cleft isn't just aesthetic, a simple procedure, a one and done, but that it affects so much of these little people's lives. Powerful.
For people to grasp just how hard these little one's have had to fight, and the road they've had to travel to be able to smile, or drink or eat or talk or hear. Powerful.
For a new mum or dad, sitting with a new diagnoses in hand, to help them see that that little baby of their's is nothing short of perfect and a blessing. Powerful.
To spread a little more awareness to create a world for my daughter to grow up in that is a little kinder and more compassionate of people's differences and abilities and disabilities. Powerful.
But most of all, for Honor and those many, many other children with medical needs to know that sometimes scars make things more beautiful.
Because without these scars, we would’ve missed out on the gold - and my girl, you are pure gold.
