"Nothing can prepare you when it's your baby"

“I don’t think anything can prepare you when it’s your baby”. These words are the words Ruben, De Wet’s dad used to reflect on his surgery, and which seem to encapsulate the entirety of the Potgieter’s CHD journey. It is true - nothing can prepare you, especially when you go through what this little two year old has already experienced.

De Wet’s heart irregularity was picked up in utero, five months before he arrived into the arms of his incredibly loving family. After finding out about their unborn baby’s heart defect, the Potgieter’s decided to not see a paediatric cardiologist, realising that nothing could be done for their little boy until he was born. “We prayed and remained positive throughout the entire pregnancy,” shares Ruben.

The Potgieter Family

On the 18th of July 2019, De Wet was born via C-section. He was pink, looked healthy and weighed 3.3 kg. Two days after this birth, De Wet was “whisked” away for tests and for a check-up, which is when his murmur was confirmed. A day later he was diagnosed with Truncus Arteriosus by Dr Kenny Govendragaloo - a serious and rare defect in which one single artery (truncus arteriosus) comes out of the heart instead of the normal two (the aorta and pulmonary artery). De Wet’s mom, Izandi, was recovering after her surgery and was unaware of the news. The Potgieter’s were given six weeks to fatten their baby boy up in preparation for his surgery. “While at home, to us, De Wet was a normal healthy baby. He drank very well and had literally no signs of abnormality indicative of a baby with a heart defect,” shares Ruben. At seven weeks old, on the 3rd of September 2019, De Wet went in for his open heart surgery, under the lead of Dr Erich Schürmann. “We did as much prep as possible… I prepped mostly in secret as Izandi can’t handle blood and needles, but I don’t think anything can prepare you when it’s your baby”. The hole between the right and left ventricles was closed and De Wet’s pulmonary artery and valve were restored and transplanted surgically. “I ate about four breakfasts that morning… we were so stressed. We had been told prior to the surgery that the chest may be left open depending on swelling, so when we went down to see our baby, we were relieved to see the chest wound was closed… and overall, De Wet’s swelling wasn’t too bad”. De Wet went into cardiac arrest the following morning. “We received a phone call at about 5 am. They told us to come in as they were struggling with this heart rhythm. When we arrived there, it felt like all hell had broken loose…” “Dr Schürmann was there, Dr Kenny, all the CTICU nurses were there…” recalls Ruben. Izandi was rushed away from De Wet while the Maboneng team worked to resuss him for forty minutes. Ruben recalls how it shook him to his core seeing their little boy “lifeless”. “One of the Sisters came to me and said, ‘come, daddy, come sit with your wife’”. While the Potgieter’s sat helpless and waiting, “Dr Kenny come over 20 minutes in and said to us, ‘we must just keep praying’. Another 20 minutes later, Dr Schürmann came over to us and said that they had managed to pull him through, and that because there was now oxygen in his blood again, he was stable. I’ll never forget Dr Schürmann telling us ‘your child is a real tough bliksem’”. The whole experience was traumatic for both Izandi and Ruben. “We saw him with his chest open… they had to quickly open it to get to his heart, Dr Kenny was massaging his heart with his hands and his eyes were completely swollen. It was at this point that the 21 day recovery really started…” One week later, Ruben jokingly says that De Wet started looking like a “Michelin Man”. De Wet had fluid on his lungs, drain pipes connected to him, a monitor to check his brain waves and his muscle tone had been affected due to it all. “We then started gyming with him when his physio was around…” shares Ruben. “During our CTICU stay, we were told that the closer your child’s bed moves towards the exist, the closer you are to getting discharged. When we arrived one day, he wasn’t where he usually was and we went into a panic, only to realise he had moved closer to the exit. Four days later he was discharged.” De Wet was finally back with this older brother and sister, but two weeks later, was struggling to breathe. He had contracted Rhino Virus and was admitted into ICU for another ten days. “Seven months later, we were back at Sunninghill for a post op check up. He had gotten so big. He was a strong, bouncy, fat baby and eating like a lion. We were proud and quite cocky when we showed up there.” But De Wet’s growth had worked against thim. During his check-up, the Potgieter’s recall how “Dr Kenny turned to face us with tears in his eyes, explaining that De Wet looked ‘deceivingly good’”. He had grown too fast and the whole operation needed to be done again, the following week. “We were devastated with the news that the constructed pulmonary artery and valve were not functioning as they should have, and that De Wet was growing so fast that he was outgrowing the artery, which meant that the operation needed to be reversed, and a newer, bigger artery and valve had to be transplanted into De Wet’s little heart”. The operation was a success, but because De Wet was older and bigger, things were different… he experienced more swelling and was able to recognise his mom and dad when they came to visit him. “He would cry when he saw Izandi, but couldn’t make a sound. He would turn red and blood would squirt out of him. This moment is when Izandi looked at me and said I can’t take it anymore, before passing out and being taken to emergency. This time De Wet was bigger and stronger, and much more aware of what was happening and it absolutely broke our hearts to watch our baby boy suffer from pain…the sedatives wearing off much quicker than was anticipated.” Three days after his op, De Wet was taken in for surgery to ascertain if there were lesions in his throat and windpipe, causing obstruction when breathing. The procedure could not be done and De Wet was kept on the ventilator. De Wet was discharged after fifteen days of recovery in CTICU. In mid November 2020, about nine months after this op, De Wet and his family paid a visit to Dr Kenny for his routine check-up. “Dr Kenny informed us that De Wet would need an angiogram to insert a little balloon into his pulmonary artery to stretch it, because it once again looked narrowed. There also seemed to be a leak in his heart…” The angiogram date was scheduled, and when the Potgieter’s arrived on the 2nd of December 2020, it was discovered that the procedure was no longer necessary. “The artery was wide and open, there was no sign of a leak… it was the biggest miracle. “Our baby came home after spending one day in hospital. Except for some damage to his vocal chords, which are a bit inflamed as a result of the ventilator during his 1st operation, we had our big, bouncy energetic baby boy back.” To top everything off, the Potgieters brave little boy tested positive for Covid-19. “He went into septic shock due to infection in both of his lungs caused by pneumonia”. Once again, their little man was in ICU where he was treated and discharged after six days. “De Wet’s oxygen levels remained stable, irrespective of the dangerously high infection score in his blood. His little heart remained healthy and kept beating regularly,” share Izandi and Ruben, who got their “healthy, bouncy little baby” back 3 weeks after his infection. “It was the third time fighting for his life... “The entire journey has had strong effects on us. We have experienced paranoia, sleepless nights and it also impacted our other children, who were so worried about their little brother. It knocked our family harder than we thought it would. There is a clear before and after.” Izandi and Ruben reflect on how forming a unity with the other parents whose children were in CTICU was a massive help for them as they navigated the ups and downs of De Wet’s recovery. “A good day for one means a lot to everyone,” says Ruben, “when one was down, we pulled them up and when we felt down, they pulled us up. “If I could share anything with parents in similar situations, it would be to make friends with the CTICU families and give your child’s nurses your undivided attention; your all - listen to them and treat them with the utmost respect. They are fallen angels looking after and treating your baby with the utmost respect. Do not try and go through this alone. Rely on a higher power, no matter who that is to you - without our connection to our Creator, I don’t think we would have made it. It gave us an inner sense of calm. And I think most importantly, remember that your child is not too small to realize his or her mommy and daddy love him. As long as they know this, they have the strength and instinct to survive. They don’t know anything about being scared. All they know is how to survive. Stay positive for your baby. Cry at home. On their darkest days, you bring the light.” “There is no way I could tell you about the amount of thanks we wish we could give to all the doctors and CTICU medical staff - Dr Kenny Govendrageloo, Dr Schürmann, Dr Naidoo and our dear Dr Ranchod. They were angels when we needed them most. They were more than doctors - they were people. We are forever grateful to you and thank you from the bottom of our hearts for fighting for our darling De Wet’s life and giving him a second chance at a healthy life. Thank you for telling us only what we needed to hear and for your honesty in saying the rest is up to God. “And lastly but not the least, our sincere heartfelt thanks to De Wet’s doctor and ICU nurses who nursed our precious De Wet back to health after his horrible encounter with Covid 19. “There was without a doubt an army of warrior angels always by De Wet’s side. Words are not enough to demonstrate our thankful hearts unto our Creator and God and to all the earthly angels that kept on praying for our baby boy.”