Going through life with a cleft lip and palate has not only made Datin Nora Abu Hassan stronger and more compassionate, but it has also enabled her to help others who have the same condition as well as their families.
“When I started going to primary school at the age of seven, I realised that I was ‘different’ because the other kids called me names and treated me ‘differently’,” says Nora, who is now 57, and mother to three grown-up children as well as grandmother to a three-year-old boy.
What is a cleft lip and palate?
A cleft lip and palate (CLP) is a birth defect that occurs when a baby’s lip or mouth doesn’t form properly during the mother’s pregnancy, resulting in a physical disfigurement, namely an opening or gap in the upper lip or the palate (roof of the mouth).
There are four main variations of CLP, namely cleft lip, cleft palate, unilateral cleft lip and palate (a single opening from the lip to the palate), and bilateral cleft lip and palate (openings on both sides from the lip to the palate).
A person born with CLP usually faces issues with feeding, speech, ear infections and hearing loss.
Nora was born with a unilateral complete cleft lip and palate Photo: Datin Nora Abu HassanNora was born with a unilateral complete cleft lip and palate, which meant there was an opening starting at the lip all the way to the uvula (the piece of flesh hanging at the back of the soft palate over the throat).
Because of the condition, she had feeding issues as a newborn.
“Although most CLP babies can suckle on the breast, they can’t swallow the milk safely. Fortunately, as a nurse, my mother knew exactly what to do. She pumped breast milk out and used a pipette to feed me,” she recalls.
Nora also suffered from speech problems. “There was a ‘tin can’ nasal sound every time I spoke, which is typical of people with CLP. The letters H and S were especially hard. Some words were hard to form and sentences didn’t flow easily. It was frustrating when others didn’t understand what I was saying,” she shares.
She also kept getting ear infections.
“My siblings did really well at swimming lessons but I kept getting ear infections and was in and out of clinics, which is common in children with CLP. It meant having to give up swimming,” she says.
Physical transformation
But if you were to meet Nora today, you would find that she looks and sounds perfect. She is a motivational speaker, book author, and social activist who is involved in social work and helping others, especially those with CLP and their families.
Nora credits this to her parents who made the decision to seek treatment for her.
“My parents brought me for treatment when I was just three months and I’m grateful to them for believing in me, and doing the right thing,” she says, adding that her book Born To Smile is also a tribute to them.
Many CLP children never go for treatment, she says.
Nora had to go through eight to 10 surgeries from the age of three months until she was in her 30s. The surgeries are a transformative process and there are two parts: repair and refinement.
“Repair work is where the CLP is corrected. Then, the refinement – which may include surgery to improve the appearance of the nose and mouth, and also fillers – takes cares of the aesthetics,” she says.
Nora reveals that during her time, the refinement process could only start at the age of 17.
Datin Nora seeks to be an advocate for individuals with CLP and their families. Photo: Datin Nora Abu HassanAt the age of three months, Nora had her first surgery to repair her lip. Then at age three, her palate was repaired. When she was seven, she had two more surgeries to further repair the palate.
Later, at 18, she had her first rhinoplasty and various procedures after that.
“When I was 23, I had a revision of the first rhinoplasty with a bone graft, after which my nose looked better and the symmetry of my face improved. In 2003, I had another bone graft to correct a fistula (hole) in the gum and in 2005, I had another round of rhinoplasty when my nose went out of shape and affected my speech,” she recounts.
“Having CLP is a lifelong commitment towards keeping things in order. It’s not about being beautiful but rather functional. The lip, palate and nose are the primary apparatus of speech and any defect, however small, will affect communication,” she says.
Nora also had to go through one and a half years of intensive speech therapy as a child.
“Although I was happy to go to speech therapy sessions, they were exhausting, repetitive and painful. I had to do various exercises to control the sound and tone of my voice so that it wouldn’t be so nasal,” she shares.
Emotional trauma
Nora with Raihannah who was born with unilateral CLP. Photo: Datin Nora Abu HassanBut it’s not just the physical surgery that is “painful”, it’s often the emotional trauma from being called names, mocked or ostracised that is more painful, says Nora.
“The most difficult thing about growing up with CLP was the bullying and being called names,” she admits.
One of the most upsetting incidents for her was when she was called sumbing (cleft) by an unknown boy in school. At that time, she was only nine.
“Then came the words senget (crooked) and sengau (nasal). I couldn’t see his face in the crowd of children, but my whole world crumbled into a heap of humiliation,” she recalls.
“I pretended not to hear it but all the other 20-odd children did. I felt the blood rush to my face in embarrassment because everyone was staring at me,” she says.
“Perhaps some children may not realise how such actions can be extremely hurtful. Perhaps they think it’s ‘funny’ or they might also have their own ‘issues’,” she says.
Coping with the pain
Nora reveals that as a child, she overcame the emotional trauma, anger, sadness, hurt and insecurity by talking to her mother about it.
“I often told her: ‘Mak, I don’t want to go to school, because people will call me names and that will be hurtful,” she shares.
As Nora grew older, she felt it would be “weird” to tell her mother such things because she was already a “big girl” and she turned to other ways of coping.
“Whenever I felt hurt and upset, I would think positive thoughts to ‘transport’ myself to a happy place so that I wouldn’t feel so bad,” she says.
Little did Nora realise then that she was actually using creative visualisation techniques to overcome her emotional pain.
Nora reveals that creative visualisation techniques helped her overcome the emotional trauma of being bullied as a child. Photo: Datin Nora Abu Hassan“At that time, I was just a child and I didn’t realise that I was using the creative visualisation technique to get over the hurt from being bullied, and I was also harnessing the power of the subconscious mind to change my mood, feelings, and outlook on life,” she shares.
Of course, today, creative visualisation is a known technique used by psychologists to help their clients. It refers to the process of using the imagination to generate images in one’s mind, and then consciously changing those images to alter one’s emotions about the subject.
It’s been used for physiological purposes such as pain reduction or wound recovery, and also for psychological healing of anxiety, sadness and depression, as well as improving self-esteem and self-confidence.
Nora says it did help her cope with the emotional trauma she went through.
Her faith also got her through her emotional trauma, she says.
“I had often called out to God, asking ‘why me?’ None of my other family members, including my siblings, had CLP. When I was going to primary school, I didn’t encounter anyone else who had CLP. So, why was I ‘chosen’ to have this condition’?” she says. “Of course, today, I see the big picture and I understand why.”
The bullying stopped when Nora turned 17 and had her refinement surgery before going to university. But even though she was physically fine, the emotional scars remained.
Nora speaks to students at schools about anti-bullying and discrimination before the pandemic.Photo: Datin Nora Abu Hassan
She admits that the journey from an insecure, bullied child to where she is today – someone who motivates and helps others who have CLP and their families – wasn’t an easy one.
“Self acceptance was a big issue for me,” she says.
In 2000, Nora embarked on her journey towards self-actualisation.
“The first step to healing is acknowledging the problem, then addressing it, and seeking help if you need to,” she advises.
“I attended many courses in leadership, language proficiency and business practices. I also signed up for hypnotherapy, neuro-linguistic programming and coaching,” she says.
While her aim was to help others, she was also helping herself, she adds.
Creating a caring society
It’s important to create awareness about CLP because there are many who still aren’t aware what it’s all about.
“That’s why I wrote a book.”
Nora’s book came out on the market in Oct 2019 before the pandemic.
Before the pandemic, she was often invited to speak at schools and organisations.
Love yourself unconditionally because your self-worth is not defined by how you look or sound, says Nora. Photo: Datin Nora Abu HassanNora’s message is always about anti-bullying and anti-discrimination, and also self-acceptance and self-love.
She also started her own talk show called Smile With Nora where she would invite guests – individuals and organisations associated with CLP such as doctors, mothers of CLP children, and adults with CLP – to share their expertise and experiences.
“I wanted to give people a chance to talk about CLP, to share what it means to have CLP, how they overcome the challenges and provide useful information for parents as well as about CLP operating procedures,” she says.
Nora was also involved with Ronald McDonald House Charities Malaysia (RMHC) as a project partner in their CSR project ‘Gift of Smile’.
The charity is aimed at helping CLP children who come from underprivileged families by sponsoring their treatments (speech, dental care, orthodontics, bone grafts, and corrective surgeries), including transportation and accommodation if they live far from the treatment centre. Families with CLP children can apply for the sponsorhip programme through the RMHC website.
Nora believes that advocacy for CLP is extremely important.
Individuals with untreated CLP will have daily challenges in communicating, and face recurrent ear infections. That’s why it’s so important to create more public awareness, especially among the B40 community to encourage them to get their children’s CLP treated, she says.
“Some parents don’t know that something can be done about it. They accept it as ‘fate’ and just go through life without doing anything about it, and as a result, the child suffers,” she says.
The mother load
A photo of Nora as a child, with her mother Puan Sri Wan Noor Daud. Photo: Datin Nora Abu HassanNora adds that the mothers of CLP children have an important role to play in their child’s life.
“I’ve often told mothers of CLP children not to blame themselves because it’s never their fault.
The cause of CLP is unknown, although some believe that genetics and what the mother goes through when pregnant may be contributing factors.
“But there are many mothers who look after themselves, don’t smoke and aren’t taking any medication, yet they have a child with CLP,” she says. “So it’s not something that can be controlled.”
Nora encourages individuals with CLP to embrace their difference and their destiny.
“There’s always a reason for something to happen, and even though it’s difficult, once you embrace your destiny, then only can you move forward and progress on life’s journey.
“It’s also important to love yourself unconditionally because your self-worth is not defined by how you look or sound,” she says.
“Seek help if you need to. When I was growing up, there was no social media and little was known about CLP, so it was more difficult.
“But now, there are support groups for mothers of CLP children as well as adults with CLP,” she adds.
Kindness goes a long way and society needs to learn to be more inclusive and compassionate.
“The concept of anti-bullying and discrimination should start from home. As parents, it’s important to instill the values in our children of being inclusive and against bullying or discrimination,” she advises.
“Teach your children not to see those who are different from themselves as less worthy or less good. And teach them not to call people names because it can be very hurtful.
“This applies not just to CLP but also in many other areas – bullying and discrimination just shouldn’t occur and it all starts with educating the young,” she says.
Nora encourages individuals with CLP to embrace their difference and their destiny.. Photo: Datin Nora Abu Hassan
“Because of my own journey, I wanted to motivate and inspire adults with CLP and mothers of CLP children. When they read the book or listen to my talks, I hope they will realise that when they embrace their difference, they can become all that they want to be and fulfill their destiny,” she concludes.
Nora’s book is available at MPH, Kinokuniya, Times, Borders and Popular, as well as online at Shopee. She plans to have it in e-book and audio format in the future, to reach a wider audience.
