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Ronde Ruben's Story of Hope


“Our first born had an atrial septal defect (ASD), so we did know about congenital heart defects (CHDs).”

Be strong and courageous.

“So the first two days after finding out about Ruben’s Tetralogy of Fallot, I was very calm.”

Do not be afraid; do not be discouraged,

“But for three and a half weeks after that, I literally cried every day."

for the Lord your God will be with you wherever you go 1.

Among the excitement of adding a little boy to their clan of four, Nushka’s high risk pregnancy had given her an uneasy feeling about the birth. “At thirteen and sixteen weeks, I had massive bleeding,” tells Nushka, “my Gynae had never seen anything like it. But we didn’t know anything about the congenital heart defect (CHD).”


Ruben was born on a Sunday morning by emergency C-section in Pretoria East. A relatively easy birth considering the concerns Nushka held over it. His first day of life saw him gasping with almost every breathe, and by 11 o'clock that night, the Kotze’s newest addition had been diagnosed with Tetralogy of Fallot (ToF) - a congenital heart defect affecting the flow of blood through the heart. Their baby boy would require surgery to remain a part of the family that had been eagerly awaiting his arrival.


The build-up to the surgery was an incredibly stressful time for the entire family. Paediatric cardiologists often advise for the surgery to take place between six and nine months after birth to ensure the baby is strong enough to handle the operation. Nushka painted the picture for her 4 year old and 18 month old daughters by explaining “Ruben has a broken heart and the doctors are going to need to fix him. The tricky part was then trying to get them to understand that they are not allowed to cut each other open… only doctors can do that.” Nushka laughs as she tells of the light hearted star in a seemingly dark night… “Everything was hanging in the air,” speaks Nushka of the inner turmoil the wait caused. “There is a large amount of uncertainty surrounding when exactly the op will be… and because every child and case is so individual, there is no strict guideline as to what you can expect”.


On October 30, 2017, cardiothoracic surgeons Dr Erich Schürmann and Dr Hendrick Mamorare performed the successful 3 hour operation on Ronde Ruben as he is affectionately known by the Maboneng Heart and Lung Institute team. His Intensive Care Unit (ICU) recovery was incredibly smooth and the family had him back home after 13 days. “You can see all the families going through the same motions during the visiting hours,” says Nushka, who found leaving her baby in ICU one of the most difficult things throughout the whole process,”everyone arrives so excited and leaves with their feet sledging across the floor”.

Beyond the support they found in and exchanged with the families of the other CHD affected children in ICU, Nushka expresses an urgency and deeply held gratitude around support systems in aiding you to stay afloat. “I don’t know how anyone gets through without the Lord, in our case, and a support system…our support system was amazing. I realised that what we went through filled out to the whole extended family. They may not have felt or understood exactly what we went through, but they definitely tried”.


“[Ruben] has given us perspective. He made us question what we spend our time doing, what we are chasing after... In the struggle to meet these perfect goals for your kids, you end up losing your kids along the way”. The gratitude for the life of their little boy is incredibly obvious. “One of the first things we did when we got home from the hospital was make a Christmas bed in the lounge… because why not?; what’s life about… family and love is what matters”.


Nushka continues to openly document Ronde Ruben’s story of hope on her Instagram - constantly seeking and welcoming connection with other parents who have gone through, or are about to go through, what herself and her family went through. “One of the first things I did was look up online groups; to find someone that had gone through what we were going through. It really helps knowing that you are not alone”. Engaging with the online support - seeing pictures of babies after they had had their ops, had prepared Nushka for what was to come when her baby would return from theatre more swollen than usual.


“Right before the op, I read a passage that said to me, whether he makes it or not, you will be Okay, and it was exactly what I needed to hear,” says Nushka. No matter the depth of the dark or the ache in your heart, remember that all around us lies hope. For the Kotze family and their little fighter: strong and courageous may you forevermore be.

  1. The scripture Nushka Kotze and her family held unto during the most difficult times of Ruben’s journey. Joshua 1:9.

© Maboneng Heart and Lung Institute 2017 | Images: Nushka Kotze

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