Smiles turn upside down
DELAYED: ELECTIVE SURGERIES TO CORRECT GENETIC PROBLEMS PUT OFF
Lockdown results in backlog, causing distress to patients and carers.
Part of adapting to the world’s new normal is being able to perform daily tasks with some degree of independence. But for children living with facial deformities awaiting life-changing surgery, this new normal is not an opportunity for growth or self-reflection – it is a renewed source of stress, with potentially damaging psychological and physical effects that will be felt long after the pandemic.
Smile Foundation chief executive Hedley Lewis said Covid-19 has resulted in a significant backlog of elective surgeries, which “not only puts hundreds of children … at a disadvantage, but the costs will run into hundreds of thousands of rands to try to catch up to pre-Covid levels of service”.
Lewis expressed the frustration felt with the pandemic, which was beyond anyone’s control, and said it was not yet clear when elective surgeries would be allowed to take place.
He said trauma-related and urgent surgeries, including burn victims, were still taking place.
A surgeon who has worked with Smile Foundation said surgery delays would be rectified, but psychological effects could remain and significantly impact the confidence of a child who looks different to peers. And by proxy, their families as well.
There are hundreds of children and caregivers suffering due to surgery delays.
One such family looks after a two-year-old girl suffering from Apert syndrome.
Apert syndrome sufferers’ fingers and toes are fused together and they have facial abnormalities due to the premature fusion of their skull bones.
The genetic disorder affects an estimated one in 65 000 to 88 000 newborns.
Rhiaadra was scheduled for surgery on 2 June, but Covid-19 meant a provisional rescheduling to September.
The surgery was aimed at making more space for her brain and the shape of her skull does not provide enough protection for her eyes.
Paediatrician Dr Engela Honey said problems related to Apert syndrome included an abnormal facial profile, cleft palate, teeth abnormalities and airway blockages.
Brain development was also affected, which resulted in intellectual disabilities.
“Her health relating to the room for her brain to grow is a medical challenge and will be resolved when she has the surgery she needs later this year,” she sad.
Rhiaadra’s mother has also been emotionally affected after realising she will need to prepare herself and her child again
The costs will run into hundreds of thousands
Image: Supplied for the surgery.
Honey said the shock involved in parents discovering something wrong with their baby had to be dealt with through genetic counselling to help parents “deal with the shock and remove guilt feelings”.
“The physical disability of not being able to use their hands properly must have a major impact,” she said.
“The trauma of repeated surgeries will also affect the child’s ability to adapt with daily life…
“This will, in the future, affect their ability to go to school and enter employment.”
Throughout the lockdown, Lewis said, the Smile Foundation had continued to support patients awaiting surgeries by providing psychological assistance, mother-to-mother support and providing items such as cleft bottles for cleft lip or palate surgeries.
But to address the backlog of surgeries and to continue providing support to patients and their families, it needed the public’s help in “giving these children a chance to smile”.
As such, the foundation has created a raffle. Tickets cost R100 each and participants stand a chance to win a R100 000 cash prize.
The raffle will be drawn on World Smile Day on 2 October.
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