Family’s journey to share hope

2017-07-11 06:02
Sister Marianna Brink and Thaakirah after her discharge in 2014.

Sister Marianna Brink and Thaakirah after her discharge in 2014.

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A six year old girl from Silvertown has inspired her family to raise awareness of the difficult disease she has to live with.

They even established an organisation, Brave Little Hearts South Africa (BLHSA), a congenital heart disease (CHD) advocacy and family support centre.

It was established in 2014, in honour of Thaakirah Matthews who was born with CHD in 2009, which caused multiple ­complications.

“We established the organisation in honour of the bravery and courage of our little angel, who managed to triumph over two heart and two brain operations during the first four years of her life,” says her father and BLHSA director Fareed Matthews. “It has been a tough journey for all, but Thaakirah showed us the meaning of life.”

The Matthews family has experienced a journey of patience, perseverance, faith, hope, trauma, fear, helplessness, sadness and ­happiness.

“All of these experiences became key bases for the establishment of BLHSA, so that no family affected by CHD should feel alone and helpless in their journey,” he says. “We know the feeling of no support and complete confusion on this condition. We therefore strive to share hope, educate and offer holistic support to all families of children born with CHD.”

Known as “the Brave Little Heart” at the Red Cross War Memorial Children’s Hospital, Thaakirah managed to grab the media’s attention with her inspiring story.

According to medical officials, her condition is rare as she falls in a group of 1 to 3% of global congenital heart defects.

The bubbly survivor is up and about, attending a normal school and living like any other child. But the scars and memories ­remain.

“We always knew her conditions since birth, but it was not that serious at the time. Doctors were prepared to do a heart operation, but every time we prepared ourselves for the big day, she would fall ill, postponing the operation. This happened for two years,” says Matthews. “In 2013, she eventually suffered what doctors assumed was a stroke. She showed signs of facial paralysis and was immediately admitted to the hospital’s cardiac ward.”

The next day, Thaakirah lost her eyesight and movement on one side of her body.

Every time the family thought things were getting better, it actually got worse, adding more complications to her life, says ­Matthews.

“Doctors started panicking and realised that they were no longer working with a heart patient. After numerous scans, neurologists detected two abscesses growing on her brain. They had to perform a serious operation that had not been done for years at the hospital. It was a scary moment for everyone, especially being told that the risk was not waking up after the surgery.”

“I spent my days and nights crying, putting my trust in doctors, but nothing came right. During this time I lost my job, home and family, who split to separate homes due to financial difficulties. I couldn’t understand why this was happening to us,” he adds.

Matthews says expert doctors were flown here, but refused to go ahead with surgery due to various risks. At last a local resident doctor stepped in to do the heart surgery that lasted 12 hours. A Bex Nikaidoh procedure was performed on Thaakirah, the first surgical procedure of its kind on a child’s heart at the children’s hospital.

“My daughter’s main arteries were upturned to the correct position, and her pulmonary vessel was brought out interiorly and connected to the right heart ventricle due to the complex narrowing of this vessel. This was another milestone achievement for the hospital.

“Thaakirah is doing okay for now, but is still missing a valve. She was born without a valve and would need an operation when she is much older, depending on how her body responds.”

BLHSA urges parents with CHD children to come forward for support.

The organisation is also calling on local business to sponsor its educational programmes and much-needed branded and information material.

In the meantime, Matthews is set to leave for Barcelona on Saturday to represent South Africa for CHD family advocacy at the first International Congenital Heart Leadership Summit and 7th World Congress of Paediatric Cardiology and Cardiac Surgery. V For more information on Brave Little Hearts SA, contact Fareed Matthews on 062 316 2656 or info@­brave­littlehearts-sa.com or visit the BLHSA Facebook page or @BraveLittleHeartsSA on Instagram.

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