Superhero parents raising children with cleft lip and palate — Aufa Dahlia Bahar and Noorhidayah Zainal Aalam

Malay Mail

03-06-2025

JUNE 3 — When Sarah first saw her son, Adam, in the delivery room, her heart filled with love — and uncertainty.
Born with a cleft lip and palate, Adam's tiny face bore the marks of a condition that would come to define his early years.
Have you ever felt grateful for how beautifully our faces and lips are designed to support our lovely smiles? Our smiles frame our faces, enabling us to eat, speak, and function normally.
However, some individuals like Adam are less fortunate. They are born with a gap in their lips, gums, or even the roof of their mouths.
This congenital condition is known as cleft lip and palate, which can vary in severity. A cleft can affect the lips, the palate, or both, and the gaps may even extend to the nose.
For Sarah and thousands of other parents across the world, that first moment wasn't the beginning of fear. It was the birth of something heroic.
Globally, 1 in 700 babies is born with this condition and 1 in 941 births in Malaysia. This condition primarily impacts the physical appearance and function of the child, necessitating long-term, multidisciplinary care.
While much research has concentrated on the children themselves, the experiences of their parents, who play a central role in care, are frequently overlooked.
Our team of researchers at Universiti Malaya assessed the mental health of parents with cleft lip and palate and found that mothers particularly suffer from distress.
Raising a child with a cleft condition is not just about surgeries and speech therapy. It's about resilience, redefining beauty, and championing a child's right to smile freely.
And it turns out, the ones donning invisible capes in this story are not the doctors or even the children, though they are undoubtedly brave. It's the parents, the quiet warriors who rise to a challenge they never anticipated.
The first diagnosis is a collision of joy and fear. Most cleft conditions are diagnosed during routine prenatal scans.
For many parents, this news shatters the illusion of a textbook pregnancy. 'I felt like I had failed before he was even born,' Sarah recalls. 'But then I realised this wasn't about me. It was about how I would rise to meet his needs.'
Some may only be diagnosed shortly after birth. Imagine how devastated the parents must feel upon receiving this news.
Some even blame themselves for what happened. In that moment, these parents begin a journey that demands relentless advocacy.
They must become experts in medical jargon, navigate insurance nightmares, coordinate teams of specialists, and make gut-wrenching decisions about surgery timelines and feeding methods — all while nurturing a child who may be misunderstood by the world.
Children with cleft lip and palate often undergo multiple surgeries before their teenage years.
Each one requires parental courage: to hand over their child to surgeons, to manage pain afterwards, and to balance hope with realism. But perhaps the greatest reconstruction is not surgical. It's emotional.
'Kids pick up on everything,' says Ahmad, father to seven-year-old Zara. 'You have to model confidence. That means looking at your child and seeing beauty, not difference.'
These parents become the first and fiercest line of defence against bullying, stigma, and self-doubt. They coach their children on how to answer insensitive questions and cheer louder than anyone at speech therapy milestones. And they do all this while managing the normal chaos of parenting — diapers, tantrums, and endless snacks.
These parents also know the power of language and love. One of the quiet battles parents fight is over the language used to describe their children.
'We're not 'fixing' our son,' says Daniel, father of five-year-old Alex. 'He's not broken. We're helping him be heard, be seen, be whole.'
This perspective is crucial. In a society obsessed with symmetry and perfection, children with cleft conditions — and their families — often feel pressure to hide or conform.
But superhero parents push back. They post proud photos, they start support groups, and they challenge social media algorithms that favour filtered beauty. They are not just raising children. They are raising awareness.
But the secret superpower? Community. One common thread among these families is the deep reliance on community — both online and offline.
Organisations like the Cleft Lip & Palate Association Malaysia (CLAPAM) and other local cleft support groups offer not just medical aid, but emotional lifelines.
On the tertiary level, active research activities have been done to understand their needs and find new ways to help these families.
Recently, our team found that parents of Malay ethnicity, parents with higher education levels and higher levels of income, have a significantly better quality of life.
Hence, future projects could identify certain groups of parents in need to enhance their quality of life and support the well-being of these parents.
Through these networks, parents trade advice on bottle types and surgical centres, share tearful late-night updates, and celebrate tiny victories: the first time their child blows bubbles, sings, or says 'mama' with clarity.
In these spaces, the capes get passed around. Sometimes, it's one parent lifting another who's momentarily weary. Sometimes, it's a child whose resilience reminds the adults what true strength looks like.
We often think of superheroes as those who leap tall buildings or shoot lasers from their eyes. But real heroism looks like a mother spending sleepless nights researching feeding techniques, or a father holding his daughter's hand in a pre-op room while whispering, 'You are perfect.'
It looks like choosing joy in the face of fear. Like fighting not just for a smile, but for a world that will accept it without question.
Children born with cleft lip and palate are not broken. Their parents are not merely caregivers; they are architects of empathy, warriors for dignity, and builders of futures. In the month of June, we celebrate two important events to honour their journey.
Since 2012, the United Nations has designated June 1 as the Global Day of Parents. This special day recognises all parents for their selfless commitment to children and their lifelong sacrifices in nurturing this relationship.
Each year, CLAPAM and our dedicated undergraduate dental students join forces for the Cleft Lip and Palate Charity Run (CLAP Run), a fundraising event to support these remarkable children and their superhero parents.
In conjunction with the theme for Global Parents Day 2025 observed annually on 1st of June, 'Raising Parents,' let us come together to celebrate and honour these superheroes for their dedication to raising their extraordinary children!
If you or someone you know is parenting a child with a cleft condition, you are not alone. Support is available through nationwide organisations like the Cleft Lip & Palate Association Malaysia (CLAPAM) and local communities. You are doing heroic work.
* Dr Aufa Dahlia Bahar is a Lecturer and Orthodontist, while Dr Noorhidayah Zainal Aalam is a Lecturer and Paediatric Dentist, at the Faculty of Dentistry, Universiti Malaya.
** This is the personal opinion of the writer or publication and does not necessarily represent the views of Malay Mail.