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"When I look at my little man now, I just see strength": one mom's story of hope


At just five days old, baby Ratanang had seen the inside of three hospitals and had left his home province of Polokwane in hopeful search of the life and longevity Johannesburg offered. Diagnosed at Netcare Waterfall City Hospital, by Paediatric Cardiologist, Dr Sinyangwe, it was at Netcare Sunninghill Hospital that him and his family eventually settled. Ratanang was diagnosed with Holt-Oram Syndrome. A rare genetic disease, estimated to affect only 1 in every 100 000 babies born.

While the syndrome is three times less common than that of Congenital Heart Defects (CHD), three out of four babies affected present life-threatening heart problems. On the 20th of July 2017 at just two days old, it was confirmed that Ratanang had Hypoplastic Left Heart Syndrome (HLHS), whereby the left side of the heart has not develop optimally during pregnancy - ultimately affecting the flow of blood through the heart. Ratanang’s diagnosis came as a complete shock to his mom, Mmapula. “After I gave birth to him, I was told that he had been taken to ICU [Intensive Care Unit]. I remember him turning blue, and we were told that there was probably something wrong with his heart”. She remembers feeling a deep heartache watching and imagining her baby boy living with pain.

Mmapula describes the experience of handing over her first child as a “choice-less courage”. Her words ground the affair of handing over your sick child as one of the most vulnerable acts and perhaps the most truest form of trust. “It was rough… I fell in love with the Cardiothoracic Surgeons: with their special skill”. Faith became her source of bravery. “I had to remember that I was helping my little boy fight. Praying for him, for the surgeons, for the wisdom to help them think outside the box if necessary.” The first of the three surgeries HLHS demands of Ratanang was split into two legs and spanned over two days. “A rapid two stage surgical procedure was elected by first stabilising him with a procedure to decompress the lungs and protect the lungs from high pressures, followed 5 days later by a definitive Norwood-Sano procedure,” Cardiothoracic Surgeon Dr Viljee Jonker explains. Each operation lasted several hours, during which Mmapula was plagued with stress - unable to take calls and completely dissociated from herself. “You imagine the worst,” she explains, “the Doctors are very honest about all the likely complications. I just remember the wait as a nightmare… I felt like giving up”.

Seeing her baby boy heavily sedated and swollen is not a sight Mmapula thought would bring her a sense of relief, but that is all she could feel when Ratanang moved out of theatre and into the Cardiothoracic Intensive Care Unit (CTICU). “The worst could’ve happened… my heart could’ve broken,” the incredibly proud mom explains. Dr Jonker confirms, “The strong little fighter fortunately did very well.” Recovery in the CTICU was anything but smooth sailing; “a rollercoaster ride,” Mmapula calls it. Ratanang would one day be fine and the next day back on ventilation. “I just kept reminding him, ‘baby boy, you are a warrior; you are a strong one; you are a fighter’”. Dr Jonker, Cardiothoracic Surgeon of Maboneng Heart and Lung Institute, served as a lighthouse for the family, with Mmapula expressing a deep gratitude by sharing, in a speechless manner: “you will never believe the support Dr Jonker gave us at Sunninghill Hospital… I am not a person that expresses doubt and they completely respected that; they respected the position I was in at the time”. Ratanang and his family have two more heart surgeries ahead of them, as well as several surgeries to rectify his thumb hypoplasia (due to the Holt-Oram Syndrome).

“When I look at my little man now, I just see strength - a testimony that God is alive.” At just three months old, Ratanang has taught his Mom that “in life you need to be strong. Love… and love unconditionally. Never make yourself a victim to life - don’t ask why me?” A lesson completely appropriate and congruent with the meaning of his name: love one another.

 

© Maboneng Heart and Lung Institute 2017 | Images: Mmapula Jerida Mathipa Sources: https://ghr.nlm.nih.gov/condition/holt-oram-syndrome#; https://www.cdc.gov/ncbddd/heartdefects/hlhs.html

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