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Ethan Smith's Story: "Miracles do still exist"


2 years is all it has taken for Ethan Smith to remind his mom, Christel, that “miracles do still exist.” 6 weeks after his birth, the baby boy was diagnosed with a benign tumor in the left ventricle of his heart. Some memories flow easier than others for the mom of a “miracle”. Angst engulfs Christel’s recollection of the diagnosis, “I noticed that [Ethan] was breathing abnormally,” explains Christel, when speaking of the diagnosis timeline. After finding out about the tumor, “my whole world crashed around me. We had no idea where to go, what was next… ”. The Ermelo (Mpumalanga) based Smith family temporarily uprooted to the Gauteng province, where after visiting a paediatric cardiologist in Centurion, were referred to Maboneng Heart and Lung Institute’s cardiothoracic surgeons at the Sunninghill hospital in Johannesburg. On the 2 November 2015, at just 6 weeks old, Ethan went into theatre. While in theatre, cardiothoracic surgeon, Dr Erich Schürmann discovered that the tumour “was attached to the posterior wall of his left ventricle and was closely related to the coronary arteries and mitral valve preventing excision of the tumor”. The tumor presented as a threat in that it blocked the flow of blood through the left ventricle, meaning the body was not receiving sufficient oxygenated blood to function optimally, which is why Ethan presented with abnormal breathing patterns. “Dr Andrew Tresling, the cardiac anaesthetist, informed us during the op that the tumor was unresectable” explains Christel, “we just waited in anticipation; and fear”.

After the brainstorming with paediatric cardiologist, Dr Jeff Harrisberg and colleagues, Dr Schürmann, Ethan and the heart team met under the surgical lights once more. “I performed a second operation to redirect the right ventricle to assist the left ventricle in providing blood flow to the body,” explains Schürmann. The Damus-Stansel-Kaye procedure lasted about six hours, during which the aorta and pulmonary artery were joined together. An artificial shunt was additionally added to provide adequate blood flow to the lungs. Ethan left the operating rooms still attached to the heart-lung machine. “His right heart wasn’t used to the new workload and needed time to adjust and couldn’t function on its own,” says Christel, “so he was kept on ECMO [life support] for one week. It was tough to see him like this.” The recovery period was studded with stressful events for the Smiths. Due to the prolonged ICU stay and the complexity of the procedure, Ethan was tube-fed for a while, resulting in a refusal to suck on his dummy or drink from his bottle. “The team gave him a 2 week period to learn how to suck,” recalls Christel, “otherwise he would need a stomach tube. Luckily he started sucking on the Saturday before the tube was due to go in on the Monday.” Hospital visits from his moms, Christel and Yvette, and his “Ouma” lasted 2 and a half months. From the Intensive Care Unit (ICU), Ethan moved into High Care. “I just relied on faith,” Christel’s gratitude is prevalent, “if i could say anything to parents in the same situation as me, I would say, keep on believing, no matter how dark”.

The Smith family is due back at Netcare Sunninghill Hospital for a check-up on the 8th of December, where Ethan will undergo a cardiac catheterisation, to ensure everything is functioning properly, and Dr Harrisberg will check the tumor to ensure its growth has been stunted. Ethan will have to wait for a third operation either to remove the tumor as his heart will bigger and margins between the tumor and critical structures may have enlarged, or he may require a Fontan completion. For Ethan, his bi-yearly check-ups mean a family trip to visit his uncle in Pretoria, where he confidently shows off his scar that points up to the sky. “He doesn’t understand yet, but every time he meets someone new, he shows them his scar,” a proud Christel shares. A fighter who has rightly and profoundly earned his battle wounds! Strong and long-lived may he be.

 

© Maboneng Heart and Lung Institute 2017 | Images: Christel Smith and Rory Boon Sources: http://congenital.org/hd/?id=damus-kaye-stansel https://www.diffen.com/difference/Aorta_vs_Pulmonary_Artery


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