‘I’m home safe’ – RHODurban star Jojo Robinson after another surgery
Rhiaadra has Apert Syndrome, which causes her hands and feet to fuse together. Image: Supplied
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Part of adapting to the world’s new normal is being able to perform daily tasks with some degree of independence.
Never take anything for granted, an old phrase that rings annoyingly true, has never been more fitting during the time of Covid-19.
Our entire way of life has been disrupted, with many yearning for peak-hour traffic and vibrant nightlife, much of which now seems like a distant memory.
But for children living with facial deformities awaiting life-changing surgery, this new normal is not an opportunity for growth or self-reflection. Rather, it is a renewed source of stress, with potentially damaging psychological and physical effects that will be felt long after the pandemic.
CEO of Smile Foundation, Hedley Lewis, said that 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 is beyond anyone’s control, and said it is not yet clear when elective surgeries will be allowed to take place.
He said that trauma-related and urgent surgeries, including burn victims, are still taking place.
A surgeon who has worked with Smile Foundation explained that surgery delays will be rectified, but psychological effects could remain and significantly impact a child who looks different to their peers’ confidence. 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 1 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 to protect her eyes, as the shape of her skull does not provide enough protection for her eyes.
Paediatrician Dr Engela Honey explained that problems related to Apert Syndrome include an abnormal facial profile, cleft palate, teeth abnormalities and airway blockages. Brain development is also affected, which results in intellectual disabilities.
Although Rhiaadra’s surgery delay will not affect her overall condition at present, it is still a medical challenge, and has the potential to cause serious emotional distress.
In addition, there is a possibility that Rhiaadra’s sight could be affected due to her condition, which along with her fused hands and feet present challenges in daily activities.
Dr Honey added that there is a chance that a surgery delay could further affect Rhiaadra’s neurological prognosis,
and that hand function is severely impaired when the thumb and other fingers are fused together.
“The most significant challenges for children like Rhiaadra could include lack of confidence for the child and family in public, as well as being ostracised by some because of her different appearance. Every Apert Syndrome child has different challenges.
“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,” Lewis explained.
Rhiaadra’s mother has also been emotionally affected, after realising that she would need to prepare herself and her child again for the surgery later this year.
Dr Honey explained the shock involved in parents discovering something wrong with their baby, which she said can be helped through genetic counselling, to help parents “deal with the shock and remove guilt feelings.”
“People stare and parents might want to hide their baby to prevent embarrassment,” Dr Honey said, adding that as the child gets older, this has a major impact.
“The physical disability of not being able to use their hands properly must have a major impact. 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,” Dr Honey explained.
Rhiaadra’s mother was understandably upset when her child’s surgery date had to be changed, but Covid-19 has further complicated the situation because she must be healthy enough for her surgery to take place in September.
However, the clinical psychologist assisting Rhiaadra and her family with counselling, done telephonically during lockdown, has helped deal with some of the overwhelming emotions facing the family.
“Children pick up emotions of their parents, and these emotive expressions are sometimes filtered through their families,” Lewis explained.
“The child’s confidence may be affected, as well as some of their behaviour. Having a child that needs surgery, therapy and other types of support makes these times we live in even more overwhelming.”
Throughout lockdown, Lewis said that Smile Foundation has 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 in order to address the backlog of surgeries, and to continue providing support to patients and their families, they need 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.
Lewis said the added stresses brought on by the pandemic and subsequent surgery delays means children facing increased challenges.
“We’re calling on members of the South African public to help us to continue to provide critical support to these children and their families during these unprecedented times while they wait for their much-needed surgeries,” Lewis enthused.
The raffle will be drawn on World Smile Day on 2 October.
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