Born with a cleft lip: the journey behind what was a broken smile

Proud dad Sunia with his baby girl Honor, who was born with a cleft lip and cleft palate. Photo / Provided

Kintsugi is the Japanese art of piecing together broken pieces of pottery with gold.

Art can be used as a metaphor in life, to embrace what makes us different, flawed and the beauty of scars after healing.

Stacey-Anne is the mother of Honor, a 3-year-old girl born with a cleft lip and cleft palate, and who references kintsugi when recounting her daughter’s journey.

“Some people look at you – beautiful girl – and see a face that needs fixing. 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 won my heart,” the proud mom wrote online ahead of her baby girl’s first lip surgery, when she was not was only 4 months old.

Papa Sunia said that before Honor was born, no family had experience with split babies.

Sunia, who is of Tongan descent, sympathizes with other Pasifika families who navigate their child’s journey, with the weight of religion and superstition.

“Some of them may feel cursed, for whatever reason. They might think the parents did something wrong because our culture is quite religious.

“A lot of times if they can’t understand something, they fear it.

“I just want to encourage our Pasifika families – especially our Tongan families – that there is support out there for them. There are other families walking this path.”

In New Zealand, one in 700 babies are born with a cleft lip or palate (the roof of the mouth), which is caused by the failure of the developing segments of the face to join together, according to New Zealand Slotan organization that has been supporting affected Kiwi families since the 1970s.

The exact cause of these conditions is not fully known. However, there is a general opinion that it is a combination of genetic and environmental factors.

Proud dad Sunia with his baby girl Honor, who was born with a cleft lip and cleft palate.  Photo / Provided
Proud dad Sunia with his baby girl Honor, who was born with a cleft lip and cleft palate. Photo / Provided

Cleft NZ spokeswoman Genevieve Boyer said: “The roof of your mouth keeps liquid out of your nose and air out of your nose. A child can live and breathe, but will have difficulty feeding and speaking.

“The cleft can sometimes extend and affect the gums and also the lip. Sometimes she can go further and touch the nose.

“The lip is split which means the baby won’t be able to suckle, talk and form sounds properly, so there are initial repairs from an early age to enable feeding and speech.”

Boyer said if there is a cleft lip it is usually fixed early – when a child is between 3 and 6 months old.

“The palate repair is usually done by a plastic surgeon in the hospital. It’s a pretty big operation.

“When you come to fix the palate, it’s usually between 10 months and 1 year. It’s to help with speech development and to help food stay in the mouth.”

Other difficulties that split babies may experience are hearing loss, dental problems, and as they age, they may need ongoing speech therapy.

The slot trip can last a lifetime; some requiring further surgery into adulthood and the experiences of each person affected by cleft lip and/or palate will vary.

A miracle baby

Kym and Kevin, whose 4-month-old daughter Bobbi-Lee just had her first nose and lip surgery, are another family on the same journey.

The parents discovered the condition of their child’s cleft lip during a CT scan during Kym’s 23rd week of pregnancy.

Bobbi-Lee's cleft lip was detected during a CT scan during her mother Kym's pregnancy.  Photo / Provided
Bobbi-Lee’s cleft lip was detected during a CT scan during her mother Kym’s pregnancy. Photo / Provided

Neither knew what a cleft lip was and learned about it from the hospital team and an online support group.

“She was a miracle baby, because we never thought I was going to get pregnant. No one wants a little baby to have a rough start to life, but I don’t think it affected her that much.” , said mom Kym.

“That probably affected us more – worrying about her having surgery or being on the other side as a completely different baby.

“She’s happy. I think that’s the main thing.”

Speaking about the surgical work available for children affected by cleft palate or cleft lip, Kym described the work as “phenomenal”.

This work, as well as other cleft services, procedures and therapies, however, depends on where you live in New Zealand.

Little Bobbi-Lee flashes a big smile after undergoing her first nose and lip surgery.  Photo / Provided
Little Bobbi-Lee flashes a big smile after undergoing her first nose and lip surgery. Photo / Provided

Boyer said it would be nice if there were psychology services involved and better access to speech therapy.

In Dunedin, for example, it is not a plastic surgeon but an otolaryngologist.

“So there are different services depending on which hospital you go to. It’s a bit of a postcode lottery to figure out which center you’re in, what they offer and what kind of support they have. .”

The parents and families of Honor and Bobbi-Lee continue to be supported by Cleft NZ.

The day before Honor’s sixth procedure, Sunia and Stacey-Anne told the Herald how their daughter was named, to celebrate her life and remember her parents’ love.

“We are honored to be her parents and we know her life will be a life of honor. We just wanted her to always know that.

“There is 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 is still a normal 3-year-old girl who loves to sing, dance, twirl and climb trees. We are so grateful for her journey and to have been chosen to help and guide her.”

A letter to my daughter Honor

I read somewhere once about the Japanese art of kintsugi, the practice of taking a broken vessel and filling the cracks with gold, for it is often in these broken pieces that unique beauty is found .

I have to tell you that this journey – like this ship – as broken as it may seem at first, is being filled with gold.

There’s so much I could write here about how incredibly resilient these babies are. How it was so much harder than I could have imagined.

How it brought so much more joy than I could have ever dreamed of. How milestones that aren’t even milestones for most babies are the biggest wins.

Pride, fear, relief, support, feeling completely alone and then knowing that you are never alone.

And awareness is important. It’s important because it’s powerful. If being aware can help another person on their own journey, that’s powerful!

If it helps anyone understand that a cleft isn’t just a cosmetic, simple, one and done procedure, but it affects the lives of these little people so much. Powerful.

So that people understand how hard these little ones had to fight and the path they had to travel to be able to smile, drink, eat, speak or hear. Powerful.

For a new mom or dad, sitting with a new diagnosis in hand, to help them see that their little baby is nothing less than perfect and a blessing. Powerful.

Raising a little more awareness to create a world my daughter will grow up in, a world that’s a little kinder and more compassionate to people’s differences, abilities and disabilities. Powerful.

But most importantly, for Honor and those many, many other children with medical needs, know that sometimes scars make things more beautiful.

Because without those scars, we would have missed the gold – and girl, you are pure gold.

Christine E. Phillips