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Stephan's Story

Our Journey began in April 2022 with a routine vaccine and check-up with a new Nursing Sister. This is where our lives changed!

We were referred to a specialist paediatrician in Bedfordview, who immediately referred us to a paediatric cardiologist, who gave us part of the initial diagnosis.

We decided to make an appointment with paediatric cardiologist, Dr Jeff Harrisberg, for a second opinion and saw him on 31 May 2022. Dr Harrisberg confirmed that our boy, Stephan, had a Ventricular Sepatal Defect (VSD) as well as an Atrial Septal Defect (ASD) - holes in wall between the lower and upper chambers respectively. It was here that we learned that Stephan’s VSD was exceptionally large and were asked: “what are we waiting for?”

Little Stephan on the day of his open heart surgery.

We sat in Dr Harrisberg’s office while he explained everything about our boy’s defect in detail. Stephan needed open heart surgery and we should not waste any time. His surgery was booked for the following week.

Dr Erich Schürmann was Stephan’s surgeon. The following week came, and we were admitted to the paediatric ward the day before the procedure. Dr Schürmann saw us that evening and explained the whole procedure and we felt at ease. We arrived at this place within ourselves feeling like everything was going to be ok.

On the day of surgery, our nerves took over… our baby boy of only 5 months was having open heart surgery. As first-time parents, you can imagine how overwhelming this was. We had to make this decision for him and he had no idea what was about to happen. He was full of smiles and a happy little guy that morning.

Hours later Dr Schürmann and Stephan’s anaethetist, Dr Krishnee Naidoo, gave us the thumbs up - all went well, our baby boy made it. What a relief. It was now time to recover.

At 24 Hours after surgery, Stephan went into Pulmonary Hypertension Crisis. The CTICU called us asking us to come back. Our hearts stopped ….. what had happened? We had seen him an hour prior and he was doing so well. Are they sure it was Stephan?

Our baby endured an hour of CPR. Doctors and nurses surrounded his bed doing everything humanly possible to bring him back. They did. These doctors and nurses never gave up. After this ordeal, Stephan was put on an ECMO machine, cell saver, dialysis and many more. Dr Schürmann asked for meeting with us during which we explained to us the odds and that things were not looking good. We were told that Stephan could not be on the ECMO for more than 7 – 10 days.

Stephan made it through the night - which was a sleepless night for us with many phone calls to the hospital.

Dr Schürmann returned our phone calls right after we checked in with Stephan’s nurse. He said that he needed to go back into theatre as there was some bleeding and they needed to tidy a few things up.

We were panicked again, asking if he was stable enough, would he survive another surgery, 3 in 3 days? How much more can this little baby endure?

Hours passed into his third surgery when we finally heard beeping. It was our little boy coming out of theatre with a thumbs up from the doctors. We were relieved… he had been strong enough to go through another procedure.

Days passed and Stephan continued to improve, getting stronger by the day. On his fourth day of being on the ECMO machine, Dr Schürmann called to tell us they were removing the ECMO the next day, which was a Sunday. We were a little concerned as we thought that the doctors did not work on Sundays, and we questioned if this was a safe option.

We arrived early that Sunday as our little warrior had to go back into theatre to remove the ECMO machine. An hour passed until we heard it - the beeping in the passage. It was our boy, the removal of the ECMO machine had been a success. We still had a long journey ahead of us but this was a small yet significant step forward.

Every day thereafter, Stephan got stronger and stronger. He had the most remarkable doctors and nurses looking after him. There were a few ups and downs, but this is to be expected when emotions run high.

Our little warrior survived. He pulled through thanks to the loving care of everyone around him. Words cannot express the admiration of what the doctors and nurses did for him.

25 days later, we were able to take our warrior home.

A huge thank you to the Maboneng Heart & Lung Institute, Dr Harrisberg and all the nurses and other staff members that attended to Stephan in the Netcare Sunninghill Hospital CTICU, you truly are all angels on Earth.

Stephan is now 7 months and living his best life surrounded by lots of love from family and friends.


Pictures shared with permission. Taken by the van Wyk family.


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