“CHD is real and so are we”: Brave Little Hearts South Africa
Brave Little Hearts South Africa (BLHSA) is a support and advocacy group for parents of children with congenital heart disease (CHD). BLHSA strives to raise awareness of CHD by facilitating and implementing support programmes for families with CHD, and advocacy by creating platforms in the medical field for engagement concerning critical CHD matters. BLHSA also has school programmes where we educate children as well as staff about CHD.
Brave Little Hearts SA was founded in honour of our daughter, Thaakirah Matthews, who was born with a critical congenital heart defect that went undiagnosed at birth. Thaakirah was born with double outlet right ventricle (DORV), transposition of the great arteries (TGA), pulmonary stenosis (PS), and ventricular septal defect (VSD). Thaakirah’s condition is statistically classed as 1 in 500 000 which falls into 1-3% of the global CHD cases.
I had a normal pregnancy, and all my pre-natal checkups apparently came out clear. After Thaakirah was born she did have an “odd” colour but I was told that it was because of my hormones that were still in her system and with time her colour would change. During our stay in hospital, I struggled to breastfeed, but again I was told that it would take time and that I just needed to persevere. A few days later we were discharged and given a clean bill of health. But to me Thaakirah did not look well. At her anti natal checkups, I again questioned her colour. Her body from just above her buttocks to the end of her feet was a deep purple colour. Her lips, tongue, and the inside of her mouth was that same deep purple colour. But my concerns were dismissed. Because Thaakirah was struggling to gain weight I was at our local clinic basically every day to help with the feeding. And at each visit I would ask if she was ok because to me, she did not look “right”. Despite being surrounded by medical staff (both private and government) on an almost daily basis, Thaakirah’s critical heart condition went unnoticed.
At 3 months old Thaakirah got sick with diarrhea which resulted in us going to our local hospital where the doctor took one look at her and said, “Your daughter has a heart condition.” And that is how our journey with CHD officially started.
On the one hand I was glad and relieved that I finally knew what was wrong with Thaakirah, but on the other hand……
Thaakirah’s oxygen levels at diagnoses was 55%. Once her diarrhea cleared, she had her first heart surgery. Over the next couple of months until Thaakirah turned 2 the hospital became our second home. I had a hospital bag permanently packed because every other week we were admitted. Fortunately, this time around I knew the signs and symptoms of CHD and what to look out for.
In 2013, a visiting cardiothoracic surgeon from France came to South Africa to perform Thaakirah’s corrective surgery but she developed an ear and throat infection, and the surgery was cancelled. While her little body was fighting the infection, she showed signs of facial paralysis and was admitted to the cardiac ward at the Red Cross War Memorial Children’s Hospital in Cape Town, South Africa. A day later, she lost movement on one side of her body and after an MRI scan, neurologists detected two abscesses growing on her brain – one on the surface of her brain and the other in the centre of her brainstem in a space less than 2mm in diameter. This resulted from infected blood clots which moved from one heart chamber to the other and up to her brain.
On 12 July 2013, Neurosurgeons executed an emergency operation on the abscess on the surface of her brain, but the second abscess that was in the centre of her brainstem was growing very fast and destroying everything in its path. With each passing day the paralysis got worse and Thaakirah started to lose her eyesight and speech. On 16 July 2013 neurosurgeons performed a stereotactic neuronavigational-guided aspiration of the abscess using the Cape Town Stereotactic Pointer, designed by a team of Cape Town professionals. This operation had not been done for years at the Red Cross War Memorial Children’s Hospital and the risk was paralysis or not waking up after the surgery. The procedure was successful, and Thaakirah had an excellent recovery after a period of critical care in the hospital’s pediatric intensive care unit – the largest ICU for children in Africa. However, this journey of hospital admissions was not over for Thaakirah as her heart defects were still detrimental.
After suffering 2 cardiac failures in early 2014, Thaakirah had a Nikaidoh-bex procedure performed by resident cardiothoracic surgeon, Dr André Brooks – a first time surgical procedure of its kind on a child’s heart at the Red Cross War Memorial Children’s Hospital. On 3 December 2023 Thaakirah will be celebrating her 13th birthday.
After diagnoses, looking back all of the signs were there: blue colour, shortness of breath, difficulty feeding, clubbing, and sweating profusely. Lack of awareness could have resulted in another death. But Thaakirah did not become a statistic. She became a source of inspiration and hope for others.
Brave Little Hearts SA biggest achievements:
• In July 2016 BLHSA facilitated 2 successful cardiac surgeries in both Kenya and Kurdistan respectively.
• In July 2017, we became a founding member of Global ARCH.
• In 2018, BLHSA ambassador Thaakirah and her sister, Sumayyah, formed part of RX Radio SA (a radio station based at the Red Cross War Memorial Children’s Hospital run by the children for the children) where they interviewed doctors and nurses regarding CHD.
• In 2019 BLHSA was awarded a Platinum Partner Award Status for our contribution during the World Birth Defects Day Awareness campaign. Globally 172 organisations participated in this awareness campaign.
• In 2019 BLHSA donated a much-needed portable echo machine to the Provincial & Cecilia Makiwane Hospital in the Eastern Cape.
• 3 December 2019, Popsicle Initiative was launched, which is the newborn pulse oximetry screening for all newborns at Mowbray Maternity Hospital in Cape Town South Africa. (This is not a compulsory screening in South Africa)
• 3 December 2020 in partnership with the Western Cape Provincial Health Department, Brave Little Hearts SA launched South Africa’s first Provincially endorsed National Congenital Heart Defects Day.
• In 2023, BLHSA attended and partook in the 8th World Congress of Pediatric Cardiology and Cardiac Surgery in Washington DC.
Major challenges that we are experiencing is the lack of knowledge and understanding of CHD by the parents and communities as they do not understand the seriousness of the condition. Our experience and research indicate that there is not enough focus placed on congenital heart disease detection prior to or at birth.
BLHSA hopes to educate parents, caregivers, and the community about the signs and symptoms of CHD, thereby giving them knowledge to empower themselves and advocate for their children once they leave the hospital.
BLHSA would like CHD to become a household name.
BLHSA would like every child born with a CHD to have a fighting chance at life.
”Helping To Mend – Broken Little Hearts – One Heart – At A Time”
#CHDisReal
