Mother of boy born with cleft lip fights misconceptions: ‘It’s a life process’

Over the past 20 years, awareness of cleft lip and palate has grown, spurred in part by television advertisements from the non-profit organization Smile Train, which bills itself as “the largest cleft palate charity in the world.” world”, and social media, with #cleftlipandpalate attracting over 87 million views on TikTok alone.

But misconceptions about birth defects, which can affect the mouth, lips and even the nose, persist.

To address this issue, a Connecticut mom is speaking out and encouraging others to share their experiences in July, which marks National Fissures and Craniofacial Awareness and Prevention Month.

“People will always say, ‘Oh, that’s just cosmetic,’ but that’s not the reality,” Lauren Onishi of Guilford, Connecticut told “Good Morning America.”

“There are so many things that go into this,” she said. “[Children born with cleft lip and palate] going through a lot and recovery is not easy.”

Each year in the United States, about 2,518 babies are born with cleft lip and palate, 1,402 are born with cleft lip and 2,333 are born with cleft palate, according to Centers for Disease Control and Prevention data.

Onishi’s son Adriano, now 9, was born with a cleft lip and throughout his young life has undergone three surgeries, with another scheduled in the next two years.

PHOTO: Lauren Onishi discovered when she was three months pregnant that her son had a cleft lip. (Lauren Onishi)

She said she discovered her baby had a cleft when she was three months pregnant. “My son’s problem was breathing and eating with half his lip,” she said.

Other issues that can affect children with clefts, in addition to having difficulty eating, include speech and hearing problems, infections, self-esteem issues, and complications from surgery. , according to CDC.

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After Adriano was born, doctors recommended that he be treated with surgery; he had his first at 3 months.

“It’s not just surgery and then you’re done,” Onishi said. “It’s another operation, then you wait, another operation, then you wait and hope.”

Adriano’s first surgery lasted six hours and during his recovery he developed thick scar tissue, which closed his right nostril, requiring him to undergo a second “re-do” operation, according to Onishi.

PHOTO: Onishi said the recovery process after cleft lip surgery

PHOTO: Onishi says the recovery process after cleft lip surgery “isn’t easy.” (Lauren Onishi)

“It’s not like they’re just easy in and out. They’re pretty big. Like in one of the pictures you’ll see, they’re pretty much beaten up… But god thank you, kids are so resilient. But it’s a process. It’s a life process for sure,” she said.

PHOTO: After cleft lip surgery, the nasal passage can widen and help kids like Adriano breathe easier.  (Lauren Onishi)

PHOTO: After cleft lip surgery, the nasal passage can widen and help kids like Adriano breathe easier. (Lauren Onishi)

From being intimidated to feeling proud

Children with clefts or a facial difference may be bullied and face discrimination and stigma from society as a whole, but also from their families and friends, and even from themselves.

“I remember someone did a double take when I was walking around New York one day. [with my] stroller, like looking inside and giving me this weird look and I’ll never forget it,” Onishi said.

“People think of them as freaks. My kid even thought of himself as a freak, which breaks my heart and he was only then, maybe 3, 4,” he said. -she adds.

With more people with slits raising awareness through social media and events like Smile Train’s Slot Conthere’s more support than ever for the crack community – and the representation is only growing.

Onishi said Adriano was particularly drawn to RJ Palacio’s 2012 book “Wonder,” about a boy named Auggie who was born with a severe facial difference and now enjoys sharing his own cleft story with others.

PHOTO: Adriano is now 9 and Lauren Onishi says his son loves talking about his Keystone journey.  (Lauren Onishi)

PHOTO: Adriano is now 9 and Lauren Onishi says his son loves talking about his Keystone journey. (Lauren Onishi)

As for his own son, Onishi said, “After his last operation, he became so proud to have a cleft. Even to this day, he loves telling everyone everything, showing them the scars.”

PHOTO: Onishi said his son Adriano went from being afraid to look at a photo of himself to being proud of having a cleft lip.  (Lauren Onishi)

PHOTO: Onishi said his son Adriano went from being afraid to look at a photo of himself to being proud of having a cleft lip. (Lauren Onishi)

Onishi says more people should talk about the various challenges they go through, including their recovery from surgery and their choices to opt for more treatment in what is often a lifelong journey.

MORE: 60-year-old nurse and 9-year-old girl become friends with a cleft lip

“[Adriano] doesn’t want to see the kids laughed at…or bullied and honestly i think it was a blessing in disguise because it really shaped him to be a good kid, 1000%, and i think a lot of these children are the same way as him,” Onishi said.

“I think they deserve a lot of credit for being as tough as they are,” she added. “Because the only thing I notice [is] than every kid I’ve met that has a cleft lip or palate, they have such a great attitude and they’re just great kids. So there’s something to that and it shapes them in a certain way.”

Mother of boy born with cleft lip fights misconceptions: ‘It’s a life process’ originally appeared on goodmorningamerica.com

Christine E. Phillips