Cape Town - Little Thaakirah Matthews is only 4 years old, but has already undergone four major operations – one of them never performed before in South Africa.
But last week she looked radiant as she proudly stood before a mural her family had donated to the Red Cross War Memorial Children’s Hospital in Rondebosch, where all the surgeries were performed.
Thaakirah was born with congenital heart disease, a serious medical condition that affects roughly one out of every 100 babies.
Her proud parents, Fareed and Raadhiyah Matthews, told the Cape Argus that without the “phenomenal” work of the hospital, they don’t know if their daughter would have survived.
For the first three months of Thaakirah’s life the disease went undetected. Her parents realised she was not thriving, but no one could tell them what was wrong.
She had an elevated heartbeat, bluish skin colour at times and had trouble feeding – all signs, they learnt later, of congenital heart disease.
Thaakirah’s concerned mother took her to clinics and nurses, but they didn’t realise she needed urgent medical help.
“I went regularly to the clinic where they helped me with the feeding, but no one really picked anything up,” she said, speaking to the Cape Argus in a room at the hospital.
When Thaakirah fell sick with diarrhoea, her mother was advised she needed to be rehydrated. But she wasn’t happy with the diagnosis.
“I took her to the pharmacy, and the pharmacists said to me she needs to go to the Red Cross Children’s Hospital immediately.”
When they arrived at the hospital the doctor on duty immediately recognised the telltale signs of congenital heart disease.
“It took her two seconds.”
Dr George Comitis, one of the doctors who treated her, said the disease often went undiagnosed, although many of the defects could be picked up in antenatal (before birth) screenings these days.
“Certainly the message has to filter through to the peripheral hospitals and clinics to be aware of these conditions,” he said.
Comitis said most congenital heart defects were treatable if detected early, and that children were able to lead near-normal lives well into adulthood. Early detection was key.
Thaakirah’s pulse rate and blood oxygen levels were tested and the result was startling. She didn’t have enough oxygen in her blood.
The diagnosis was devastating to her family.
“Knowing that she was here for diarrhoea, andthen coming in to see your child hooked up to all these machines, it is something you have only seen in the movies,” said father Fareed.
Thaakirah’s condition is known as double outlet right ventricle, a rare and particularly serious type of heart disease. This means her two main arteries were reversed, which resulted in decreased oxygen in the blood pumped to the rest of her body.
She also had a heart valve disorder and a hole in the wall separating the right and left chambers.
At 3 months, Thaakirah had her first operation. Surgeons inserted a cardiac shunt to oxygenate her blood. But she still needed corrective surgery.
In 2013, Pascal Vouhe, a visiting cardiothoracic surgeon from the the Necker Hospital for sick children in France, offered to perform the corrective surgery, but the family felt the procedure was too complicated and the surgery was postponed.
Later, Thaakirah, then only 2-and-a-half, started showing signs of facial paralysis. She was admitted to the hospital’s cardiac ward where a day later she lost movement on one side of her body. An MRI scan revealed two abscesses growing on her brain.
Neurosurgeons operated on the abscess on the surface of her brain, but the second abscess was too deep for them to attempt to correct.
Surgeons eventually successfully performed a complex procedure known as a stereotactic neuronavigation-guided aspiration of the abscess. “This operation had not been done for years at the Red Cross Hospital and the risk was paralysis or not waking up after the surgery,” said her medical team.
On August 27 last year, local cardiothoracic surgeon Dr André Brook operated on her heart, successfully performing a Nikaidoh-bex procedure, a first for the Red Cross Children’s Hospital.
Thaakirah is now back home with her family. Her parents say she now plays for hours in the park.
Thaakirah's parents have donated a mural to a ward which depicts happy hearts frolicking in a park.
Five major symptoms of congenital heart disease
1. A heart rate that is too fast or too slow. Normal is between 100 and 160 beats per minute.
2. Babies or infants who are excessively sleepy or fall asleep during feeding.
3. A pale dusky blue skin tone.
4. Breathing that is too fast or too slow. Normal is between 40 and 60 breaths per minute.
5. Babies and infants who are cold to the touch.
* For more information on congenital heart disease talk to your doctor or visit the Pediatric Cardiac Society of South Africa at www.pcssa.org.
Visit a local congenital heart disease support group at facebook/BraveLittleHeartsSA.
Cape Argus