Cape Town - When she was born two-and-a half years ago, doctors had little hope baby Nicela Naude would survive.
Despite being born with a debilitating vascular growth on her upper body which crushed her lungs, Nicela has not only clung to life, but her endurance and vitality has astonished everyone around her.
Two weeks ago Nicela - who was diagnosed with a rare congenital called Klippel–Trénaunay syndrome which affects the formation of blood and lymph vessels - survived yet another major reconstructive surgery to debulk the tumour off her left hand and arm.
The four-and-a-half hour surgery, which took place at Louis Leipoldt Mediclinic was to improve the use of her left hand. The hand was not only bigger than her right hand, but its movement and use was also limited because of the stout fingers.
When the Cape Argus visited her home on Tuesday, the energetic Nicela, who still had stitches on four of her fingers, was bouncing around her adoptive parents, Jacques and Madelaine Naude.
“She is just so full of life... it is hard to believe that she had a major surgery just two weeks ago. She is still frightened to see her wounds... otherwise she is doing very well,” said Madelaine.
The Naudes admitted they were still amazed by Nicela’s recovery from two major surgeries - given her prognosis when she was born. She had her first operation in June last year to remove the large growth on her chest.
“Even though Nicky’s first operation on her chest was risky because of the vascular bleeding that was involved, this one was probably the scariest for us because we were told that she could lose the use of her hand due to nerve damage.
“We were not sure whether we were making the correct decision to have the surgery. We were not prepared to carry that guilt… but amazingly Nicky proved again that she is a little fighter,” she said.
The little girl first made headlines two years ago when her story of bravery, joy and hope was reported in the Cape Argus.
Her biological mother, who abused cocaine and alcohol while pregnant, left her at Groote Schuur’s neonatal unit with nobody to give her love and a tender touch.
The Naudes took her into their home and formally adopted her after she was turned down by 80 families on the adoption list, mainly because of her syndrome.
Her condition, which is also characterised by a port-wine stain, was described as life-limiting because of poor blood circulation to her left arm, and the difficulty it caused in breathing.
A renowned Cape Town plastic surgeon - Professor Frank Graewe - who operated on Nicela and is also the head of plastic and reconstructive surgery at Stellenbosch University and Tygerberg Hospital - said the surgical team was comfortable to proceed with the recent surgery following her impressive recovery last year.
“We removed tissue affected by the vascular and lymphatic malformation that Nicela is suffering from and concentrated on debulking the left hand.
We had to be very careful with this surgery as there is no clear demarcation of the tumour versus normal tissue, so our dissection was very precise,” he said.
Graewe said as with all surgeries, there were risks of complications which were heightened due to Nicela’s condition.
“Some of the risks with this kind of surgery include nerve damage, muscle damage, wound healing problems, scarring and blood loss,” he said.
Graewe said the latest surgery went well and the surgical team was pleased with Nicela’s recovery so far. “We managed to remove a large portion of the tumour on her left hand and forearm. However, it is a long road ahead but we are optimistic going forward.”
Jacques said not only was Nicela brave, but her sunshine personality had changed his attitude towards life in a good way. “She is such a lovely child. She wakes up with a smile every day. My whole look at life has changed... in every aspect. Nicky has actually made me realise our lives were probably boring before she came. She has definitely improved our lives... I cannot imagine my life without her,” he said.
* To follow Nicela’s progress, go to the Baby Nicela Charity Trust Facebook page
Cape Argus