Noxolo Ntshintshi rattles off a slew of heart conditions – coarctation of the aorta, transposition of the great arteries, single ventricular defect, ventricular septal defect, pulmonary stenosis, hypertrophy of the right ventricle – she had to come to grips with in very short time when her daughter was born.
Unakho, now 13, was born with an unimaginably complex set of heart defects which has already resulted in six surgical procedures, including four open heart operations.
Her first operation was at six weeks at the Christiaan Barnard Memorial Hospital in Cape Town.
The litany of heart conditions suggest a patient who is very seriously ill. And yet, this belies my impression of her young daughter whom I met a short while earlier.
Today (Wednesday), she is a gutsy, energetic self-styled self-styled “Queen of Hearts”, visiting the paediatric cardiac clinic at Frere Hospital not because she needs to consult with any of the doctors, but to hand out goody bags to the other young out-patients.
“She’s looking fine, you don’t see a sick child.”
The Queen of Hearts initiative was her own idea, started to simply provide toothbrushes and toothpaste to paediatric patients. She has implicated her entire family in her venture – as I chat to her mother Noxolo at the end of the outreach at Frere, younger brother Senzelwe, 11, is ferrying empty cup cake containers to the car.
On Thursday, the family reconvenes at Cecilia Makiwane Hospital (CMH) in Mdantsane, to welcome another clinic-full of young patients and for Unakho’s own consultation with the cardiologists.
CMH paediatrician Dr Felicity Goosen says she sees many complex cardiac cases but Unakho “is one of the most complex”.
Unakho’s combination of heart conditions makes her a one-in-half-a-million child. She has not yet received treatment to correct the transposition of the main arteries (the Nikaidoh-bex procedure, which was performed at RCCH for the first time in 2013).
For her mother, who still works in the neo-natal unit at CMH, it is an emotional morning. “It’s always emotional – she looks fine but you’re never sure what (the doctors) will find during the consultation.”
Noxolo had the benefit of nursing training and clinical experience which helped her to some extent in understanding her daughter’s diagnosis in the beginning, but she acknowledges she had to learn very fast and take in volumes of medical knowledge to fully appreciate her condition.
For now, the cardiology team decide to admit Unakho for further treatment to reduce the size of her ventricles. She has had two previous operations to deal with this issue and will return to the clinic in May next year for another follow-up.
It is true that our real character emerges when we experience personal crisis. Following the consultation, Unakho jumps off her bed in the day clinic ward and goes straight to distributing goodie packs and cookies.
“She’s very active,” says Dr Goosen, “always organising everybody else.”
The team of supporters is growing. Unakho’s school mates and teachers at West Bank High donate goodies, while “Team Lee”, started by Ndimpiwe Mhlontla after his young son died in 2013 of what he believes to be congenital heart disease, also visits the clinics.
Noxolo’s colleague in the neo-natal unit at CMH, Ntombi Mpendukana, is one of the supporters of the clinics.
“We’re the first people to diagnose these babies and it is very interesting to see them here, big and growing,” she says.
Noxolo laments the fact that while CHD can be detected in utero from 20 weeks pregnancy, or shortly after birth, too often these testing measures are not implemented by staff in government and private clinics and hospitals.
One result of this is children being misdiagnosed; children with breathing problems – an indicator of CHD – are often treated instead for asthma.