A Little Man with a Brave Heart

“It was our second pregnancy, so we were much more relaxed. Everything had gone well with our first son, so we thought why would it be any different with our second. We decided on a local GP this time round to make things easier with having a two year old toddler at the time. Thinking back, this was definitely one of the best decisions we made. During every scan with the doctor, he reported what he saw. Nothing abnormal was ever picked up with Jayden, which was a blessing in disguise. If I had known about Jayden’s condition while I was pregnant, I would have been so stressed and it probably would have made things worse.”

Jayden and Elaine just after birth

Elaine gave birth to Jayden via C-section on the 16th of May 2019. He stayed alongside Elaine for a couple of minutes for a photograph to be taken, but it wasn’t long before her newborn baby was rushed away to be stabilized. Jayden was connected to oxygen for two hours after turning blue immediately after his arrival. Unable to breathe on his own, the doctors present at the hospital of his birth suspected that there may be something wrong with his lungs. “There was no NICU at the hospital I gave birth to Jayden at,” shares Elaine, “so he was moved by ambulance to be tested and, of course, I followed him soon after. He spent his first day of life having his lungs examined and x-rayed, “which they discovered was all fine”, and informed the Fourie family that the only other likely problem could be his heart. “It was the evening of the day of his birth that they did the sonar on his heart. I remember sitting on the hospital bed when the doctor examining Jayden came in - he didn’t sugarcoat anything - and said to us, ‘your son is going to have to undergo a life-changing operation, and if he doesn’t, he will die. Elaine shares that those words were the “scariest words” that she had ever heard. The fact that her baby’s life was at stake was all she could think about. While Jayden’s doctor sketched out his condition for the Fourie family, they were unable to really grasp much at the time due to a lot of shock and confusion, and had many questions about whether Jayden would make it or not. Jayden was diagnosed with Transposition of the Great Arteries. At 11 pm that same night, Jayden was transferred once again, with a specialised ambulance this time, to Netcare Sunninghill Hospital. “My father, father-in-law and husband followed the ambulance all the way from Vereeniging. I unfortunately couldn’t go with at first because of my C-section… my GP wanted to make sure I was stable enough before I was discharged. They met with Dr Greenwood Sinyangwe who explained everything to my husband.” Elaine was discharged the following day and drove through to Sunninghill Hospital to be with her newborn baby. “Seeing him again and then saying goodbye again was very, very difficult, but we just had to make peace that he was in the best place he could be and that there was nothing we could do that would help him.” This left the Fourie family feeling incredibly helpless. “I struggled with this tremendously, as I wanted to be the one helping my baby, as any mother would,” shares Elaine. The Fourie family drove through from Vereeniging every single day to be with their baby boy. “It was a challenge, because we had a two year old toddler and visiting hours fell inline with traffic, but we weren’t missing it for anything.” On the Sunday, four days after his birth, Jayden went in for a balloon septostomy to buy him more time. “We rushed to the hospital. Everything went well with the procedure but we were still very stressed as we knew it was not the solution Jayden needed for his condition. The uncertainty of when and what would be next left us feeling anxious. We had no idea what was still going to come…” The following morning, “they called us to let us know that Jayden needed to undergo his open heart surgery the following day.” Elaine and her husband met with Dr Sinyangwe who went over the procedure with them. The Fouries also met with Dr Schürmann and Dr Naidoo, “who explained everything with so much confidence and empathy. After they left, we felt confident that our son was in the best hands possible.” Jayden’s surgery lasted eight hours. “It was definitely the longest eight hours of my life… sitting there looking at the clock, watching every second pass by.” Elaine expresses a deep gratitude for the fact that Dr Naidoo “was sharing updates throughout the procedure. I think we got two or three messages where she let us know that everything was okay and what was happening in surgery at the time”. Before Jayden had gone in for surgery, the Fouries had been informed that with young babies, the surgeons often decide to leave the chest open so they have immediate access to the heart incase of an emergency. Jayden arrived in CTICU with his chest closed, “which we felt was a really good sign,” says Elaine, “but we only got to see him for a couple of minutes” as his surgery time had leaked over into visiting hours.

While in CTICU, his parents drove through every single day. “We would leave home [Vereeniging] at 3pm to make it in time for visiting hours and then catch the traffic as we left and arrive home at 8pm,” shares Elaine with so much grace and conviction, “at one specific visit, Jayden was taken off the ventilator and put onto a C-PAP, which he did not react well to. His left lung collapsed and we were chased out of the room while the doctors rushed in. That was a really scary moment… just standing there seeing it all play out and not knowing what was happening. We were scared for our baby boy’s life every time something went wrong or not as planned. His left lung collapsed a couple of times thereafter, but with physio this was fixed and extra surgery was not necessary.” It was two weeks into his recovery that Elaine saw her baby boy's eyes open for the first time. “I remember that being a big focus point for me. Everyone else had seen them open but me!” At three weeks old, Jayden’s medical team were really happy with his progress and the only thing left to do was remove his feeding tube and teach him how to suck. “While we drove through, I would express my milk so they could feed him with it.

Elaine holding Jayden for the first time at 4 weeks old

“He was four weeks old when they told me I could hold him for the first time. It was really special and emotional - I still get emotional thinking about it today. Jayden and I were in the hospital room by ourselves. I can still remember looking into his little eyes and making him a promise that I would do everything in my power to teach him how to suck. This was something that he did not know how to do as he was fed via a tube for four weeks. Jayden had never associated sucking with a full stomach and that was the challenge that we were faced with. It was enough incentive for me to start driving through and visiting twice a day so that he could learn how to suck and come home. “When the hospital gave us the go ahead to leave, I was surprised and quite scared, because I felt like he wasn’t sucking properly yet, but as we arrived home, it all just happened and fell into place like it would with any normal baby.” Jayden will be two years old on the 16th of May. “He is doing so well. He is a little chatterbox, so busy and always keeping us on our toes; always making us laugh. He really is just the sweetest little kid with a very, very special heart. I keep saying that Jayden is grounded until he is thirty,” shares Elaine with a nervous giggle, “because he has put us through more stress than I think any normal child at his age would.”

Jayden at his most recent check-up

“We had a check-up the other day which felt more traumatic than his open heart surgery, even though it was a tiny procedure to check for any narrowing of his arteries. Everything was 100% fine. I always wonder how I can attach so much fear to the hospital when if it wasn’t for the doctors and team at Sunninghill, my child wouldn’t be here. “It’s been a long, good and scary journey. When your baby is in hospital for one month, it feels like a year. It made us realise that you can never take life for granted - nothing is a given… It is a scary feeling to leave your baby with strangers in a strange place away from home. We just put all our trust in the doctors and what they planned to do for him. I really had to learn to let go of control and just trust. “I thank Jayden’s medical team and the CTICU staff every day of my life. Everyday we get to hold onto Jayden and laugh with him is another day with Jayden that we are blessed with.”

Jayden on the day of his birth