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Enzokuhle Shongwe's Heart Story

The Shongwe family welcomed their baby boy, Enzokuhle, into the world on 3 November 2020. His elevated heart rate was noted at the hospital of his birth but deemed nothing to worry about and the new family of four went home as per normal. “I had concerns about his jaundice,” shares Enzokuhle’s mom, Amanda, who was in Mpumalanga with her family for the December holidays, “it didn’t go away as normal, in comparison to my daughter”. Amanda called their little boy’s paediatrician and informed her of her concerns. The way Enzokuhle was breathing had also made Amanda feel unsettled and the Shongwe’s were advised to take him to the hospital where his jaundice levels were checked. The Shongwe’s were back in Jo’burg on 29 December. Amanda, still trusting in her maternal instincts, and her husband took their boy to hospital on New Year’s Eve. “As we arrived they could see it was an emergency,” shares Amanda, who recalls the uneasy way that her son was breathing and snoring. “I made the decision to call his paediatrician just because she was familiar with him and knew everything that had happened and concerned us”. Enzokuhle was transferred to the hospital that his paediatrican was working in at the time. Amanda’s anxiety softened as she knew her boy’s history was now also being considered and taken into account. On 1 January 2022, Enzokuhle was admitted to the NICU for his paediatrician to do a thorough check on his breathing, body and blood. With Covid governing hospital regulations at the time, the Shongwe’s had to leave their baby boy in the hands of his medical team. “We came and went; I was not feeling okay not being with our new born baby,” says Amanda. “They called us on 2 January which is when we sta down with Enzokuhle’s paed and [paediatric cardiologist] Dr Jeff Harrisberg. They spoke us through his diagnosis: coarctation of the aorta, a VSD and patent foramen ovale (PFO)” – a defect similar to that of an ASD. To make matters worse, the Shongwe’s baby boy had also contracted Rhinovirus. It was Dr Harrisberg that informed them of their boy’s need for an emergency open heart surgery. “I just didn’t get what was going on,” recalls Amanda, “we had to transfer to [Netcare] Sunninghill Hospital to get an emergency slot”. They admitted him right away and at 7 weeks old, Enzokuhle underwent his 3 hour open heart surgery. “It was definitely the toughest time of my life” shares a now grateful Amanda. “He went in for surgery with Dr Schürmann two days after arriving at Sunninghill. We came in before his surgery to sign forms, which is when we were told that the op was expected to take 4 hours”. The Shongwe’s spent their waiting period at a restaurant across the road from the hospital. “My nerves couldn’t handle everything. I was just crying and crying and crying”. Amanda shares that Enzokuhle’s anaethetist kept them updated with everything during his surgery – “I still have her messages. She told us step by step what was happening”. Three hours after they had said their goodbyes, Amanda and her husband were asked to come and meet with Dr Schürmann who updated them “face-to-face”. “Dr Schürmann wished us congratulations as the operation was a success and he explained a lot of things about what they had done – things I did not really understand,” laughs Amanda. Enzokuhle spent 16 days in CTICU following his op. “There were a few bumps in his recovery process due to the Rhinovirus. We took turns to visit him [due to Covid regulations] and I was pumping all the time so that they were able to feed it to him through his feeding tube. We also called religiously. It was tough and we wanted to know what was happening: was he gaining weight; breathing properly; eating right…” “We kept our strength and trusted God,” shares Amanda, “he got better as time went”. Enzokuhle started at creche when he was 9 months old and Amanda dotingly shares that he is now a healthy and happy little guy who adores his sister. “It is like nothing ever happened… he spoke very quicly, is so clever, his breathing is perfect and he is naughty now! He is a miracle on his own!” Dr Harrisberg’s rooms is still a voluntary annual place of visit that the Shongwe’s make on. “For the first year post-op we went every two months and we do not need to go regularly now but do it for peace of mind and to make sure that everything is moving in the right direction as he grows. “It took me a long time to stop thinking and crying about our situation and to go through all the emotions of the experience and even of his diagnosis,” shares Amanda with an open heart, “we are grateful now. Enzokuhle’s voice is still a bit scratchy from the CTICU pipes but we have had it checked out and nothing is wrong with or has happened to them it will just take time”.

Pictures: taken by Amanda Shongwe and shared with permission.


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