Deron’s Story

Patient Deron Credit: Operation Smile UAE

Every moment has been a surprise for Rachelle since the birth of her first born son: Deron.

Deron, a beautiful and energetic 2 year old, began an unexpected journey in Rachelle’s life. Looking forward to a normal pregnancy, Rachelle never saw the challenges coming her way. All her prenatal scans had shown up normal, with almost no indication of a cleft or an extra chromosome.

Even though cleft conditions were not unknown to Rachelle, as her cousin’s daughter and neighbours had cleft conditions; it was never discussed nor talked about. “We don’t talk about it much because we might hurt the family, the mother if you talk about why they have this or why they have that”, Rachelle said.

‘Everything was a surprise to us, with the cleft and the extra chromosome’, recalled Rachelle.

Deron alongside his cleft condition was also born with down syndrome. Rachelle expressed that as a first time mother she refused to believe that this had happened. ‘I was in denial’, she said.

Prior to Deron, Rachelle had everything planned and stuck to a certain routine with little flexibility. But now things had changed. The expectations that she had set for herself and her first born had shifted.

When Deron was born, he had to stay in the NICU(neonatal intensive care unit) for a few more days for further observation making it even harder for Rachelle to absorb. Her worries revolved around how he would be accepted by those surrounding him, Rachelle would wonder, ‘How is he going to be embraced by the people around him(when he grows up)?’

It was through this journey that the support of her family and especially her husband had really come through. ‘He’s(her husband) very supportive when it comes to everything’, Rachelle said fondly.

Eventually she was able to welcome Deron as he is. ‘I was able to overcome the fear that I might not be able to give him the life he needs’, revealed Rachelle.

Rachelle and her husband, Donnie had begun their research into the condition and organizations that might help Deron and answer any questions they had, and that’s when they came across Operation Smile. They immediately sent across an email and soon became part of the UAE June 2021 mission.

Although this was not Derons first surgery- his previous being to repair his soft palate- Rachelle was still anxious and nervous. When Deron came out of surgery all Rachelle wanted to do was hold Deron. ‘I wanted to hug him tight, but I knew I had to compose myself.’, said Rachelle.

Deron sparked a new beginning for Rachelle to grow as a person, learning from all from her experiences. ‘When I had Deron I became very patient, I matured in a sense’, recalled Rachelle. She realised that life was too short to be spent constantly worrying, but rather to embrace every moment by taking a step back and understanding what her son needs.

Today, Deron is a very happy boy, always expressing himself and developing into a strong and receptive person. Although his journey in facing the world has only begun, the growing social media presence in the world today makes Rachelle a little more confident that Deron’s extra chromosome won’t stop him from being accepted into society.

When asked to say a few final words, Rachelle said, ‘I’m very thankful and I’ll be forever grateful to each and everyone because without the organization it wouldn’t have been easy for us.’

Patient Deron arrives at the Operation Smile UAE mission in June 2021 and is greeted by Executive Director, Morag
Credit: Operation Smile UAE

Khadija’s story

Patient Khadija with a student volunteer Credit: Operation Smile UAE

After months of prayers, two nights in labour, and 35 minutes before her mother’s birthday ended, baby Khadija arrived. This baby was indeed special.

As Aishabi held her precious baby, many questions swam in her head: Would the baby be fine? How will we feed her? Will the gap in the roof of her mouth heal on its own?

This baby had been the talk for months. Her brothers couldn’t wait to meet her and she already had her dad wrapped around her little finger. The pre-natal scans didn’t indicate anything to be concerned about and everything had gone smoothly. Even at birth, things seemed normal. The pediatrician had given them a positive response after the routine checkup.

“But she [Khadija] wasn’t drinking my breast-milk. She was crying a lot. The nurse took the baby to change her and the baby kept crying. That’s when the nurse saw the cleft palate,” said Aishabi.

At the time, Aishabi and her husband Abdul Haleem knew little to nothing about cleft conditions. No one in their family had a cleft either. Some relatives suggested that picking up a knife during a solar eclipse may have been the cause. But Aishabi and Abdul Haleem shrugged it all away and focused on their precious newborn.

The initial few months were the toughest for the family. Like all babies with cleft conditions, Khadija too had trouble being fed. Aishabi recalled nights where the baby cried throughout, falling asleep in the morning out of exhaustion.

The pandemic also meant that Abdul Haleem and Aishabi couldn’t rely on their family, who were all back home in India, for support.

“I cried a lot. I needed my mother, at least,” recalled Aishabi.

Amidst all of the uncertainty at home and out in the world, Aishabi embarked upon hours of Google searches. One day while surfing on the internet about the surgical procedures to treat cleft palates, Aishabi stumbled upon Operation Smile UAE.

“I told my husband to contact them. I saw that they had done surgeries before and thought that we could also have a chance. He emailed and alhamdulillah*, they replied immediately,” explained Aishabi.

However, at the time, medical missions in the UAE had been suspended due to COVID-19. The one step they had taken towards surgery seemed to be a step backwards.

“But they always stayed in touch with me. They made us comfortable and told us that they will do [Khadija’s] surgery,” Aishabi’s voice softened as she told her story.

Aishabi took it day by day, and with her husband’s and sons’ love and support, things started falling into place slowly. After a long wait, Abdul Haleem and Aishabi found out that their daughter was eligible for surgery in the June 2021 medical mission at Healthpoint. Khadija, along with her mom and dad, travelled to Abu Dhabi.

Baby Khadija spent time with her dad in the waiting room as they waited to be called into the operating room. After this, only Aishabi would be by Khadija’s side. Because of COVID, only one parent was allowed to be with the patient after surgery.

“It was very difficult for him [Abdul Haleem]. I know he was hurting. ” Aishabi said.

Aishabi counted the seconds and minutes to meet her daughter again. As soon as she saw Khadija after the surgery, she was overwhelmed by so many emotions. When asked how she felt after seeing Khadija, Aishabi chuckled, ”I can’t explain. It was very difficult. My tears wouldn’t stop.”

Her big brothers are even more ecstatic to meet their sister.

“You know, they are calling me every half an hour. [They say:] Amma, we want to come to Khadija. They love her so much,” laughed Aishabi.

Aishabi ended with a message to other parents who may be going through a similar experience.

“Don’t lose hope. It’s not something bad. All babies are the same, just a little different.”

Alhamdulillah: an Arabic phrase that translates to “praise be to God”.