Young CHD sufferer helps raise awareness of disease
AS A young girl living with a congenital heart defect (CHD) 12-year-old Unako Ntshintshi is determined to raise awareness about the disease, especially during September which is Heart Awareness Month.
The West Bank High School pupil believes that if detected early, CHD can be managed. Her mother, Noxolo, said when she gave birth to Unako , she was ecstatic with her little bundle of joy. She took her home, but after five days, noticed that she was breathing heavily, sweated a lot and was always asleep.
“She was always sleeping and on the fifth day, she couldn’t breathe and I took her to the doctor. From a pink baby, she turned pale and white.
“This is when she was diagnosed,” said Noxolo.
Unako had her first operation when she was just six weeks old.
A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, be put together the wrong way, have holes between chamber partitions or may have narrow or leaky valves or narrow vessels.
“I get tired easily when I do activities here at school but I am lucky because my teachers and classmates understand. The palms of my hands are always cold.
“I have spoon-shaped nails and my lips look purple or very dark. The weather also plays a vital role in how my lips look. Some people think I am just thin, they don’t know about my condition,” said Unako.
CHD is a type of congenital disorder (CD) or birth defect. “Although congenital defects affect many babies, South Africa still does not recognise it or prioritise it as a health care issue in our country, which is sad. We would like to see this change,” said Noxolo.
She also mentioned that a simple pulse test for a child on their right hand could detect it from an early stage.
Some of the symptoms are :
● Too slow or fast heartbeat. Normal is between 100 and 160 beats per minute;
●Excessively sleepy and falling asleep during feeding,
●Pale, dusky and blue skin tone,
●Breathing too fast or slowly. Normal is 40 and 60 breaths per minute;
●Cold to the touch, especially the hands and feet.
Onako’s teacher, Beth Mokawem, described her as a young woman with lots of character.
“We love her!” said Mokawem.
Noxolo said they were looking for parents who had CHD children and looking at starting a support group here in East London. One already exists in South Africa, called Brave Little Hearts SA. To get in contact with her, call 073-363-7421.