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"God Gave Her Will Power and a Fighting Spirit to Carry Her Through"

After a challenging conception journey, the Naidoo family arrived at their first appointment at a fertility clinic only to discover that they were finally pregnant with their second little girl. Tracy began her second pregnancy journey with two tiny embryos living inside two tiny sacs. She was expecting twins and it was the presence of twins that resulted in a referral to a fetal specialist. At about 10 weeks into the pregnancy, two sacs still remained but one heartbeat had vanished, and Tracy was told that she had experienced vanishing twin syndrome. It was almost as if the angel soul had lead the Naidoo’s to the fetal specialist, for it was the specialised equipment and technology that enabled Nikita’s diagnoses at 20 weeks gestation. “It was the last week of June,” shares Tracy, “a Thursday or Friday and our doctor had an emergency, so I was actually seen to by his assistant. I was scheduled for a normal check-up and it was sometime into the examination that she just went quiet. The assistant left the room to speak with the specialist and when she returned I was told that the left side of Nikita’s heart was enlarged and the right side was deformed.” Tracy left the fetal specialist clinic in complete disbelief. “I left my car there, and called my hubby to pick me up. I just didn’t understand what was going on at this point. I was devastated. We had had such a journey to get our baby and were just getting to know her.” Nikita’s CHD was undiagnosed at this point, but a defect was confirmed by the Naidoo’s gynaecologist the following day. “We were shockingly advised by our gynae that our baby wouldn’t survive, and that we should schedule a C-section to terminate the pregnancy. I was already five months pregnant.” One thing was certain for the Naidoos… they were keeping their baby girl. “We went home and did our research, which is when we decided that whatever this means, we need to see it through because it’s our baby…” The Naidoos went back to the only place they knew - the fetal specialist clinic - which is when they were referred to Netcare Sunninghill Hospital by Prof Nicolau. He told us to “phone Sunninghill Hospital; that they have the best heart doctors and heart specialists, especially for kids. I just picked a number… I chose the first one I saw and got through to [paediatric cardiologist] Dr Harrisberg. I explained that I needed to see him urgently - that I needed to understand what was going on. I called on Friday and got an appointment for Monday.” It was “uncharted territory” for Tracy and Randall. “We were examined by Dr Harrisberg with an echo and he diagnosed Nikita with Pulmonary Atresia.” A condition in which the valve that controls blood flow from the heart to the lungs does not form at all - meaning the body is not able to receive any oxygen. “At the time, there was no blood flow to the right side of the heart and the left side was carrying all the weight and function of the whole heart. “Dr Harrisberg explained that Nikita had about a 10% chance of surviving… that she may not even survive the birth. We were informed about the consequences - about the expenses; that she may not be able to breathe when she arrives… but we wanted to give our daughter a chance at life… we just felt like that is what she deserved. Dr Harrisberg told us that should we choose to keep our baby, that he would stand with us for the entire journey whatever the outcome, he would be there. We felt so loved and cared for and we felt like our child mattered. Randall and Tracy immediately informed Harrisberg that they were keeping their baby and “we moved over to a gynae at Sunninghill”. “It was difficult news to process. It took us a couple of weeks. Dr Harrisberg had given us visuals - he had drawn pics - and explained everything in layman’s terms, but we also researched all the medical terms… we just wanted to know what we could do”. Tracy went through a difficult patch, questioning if there was something she had done differently to her first pregnancy to have caused Nikita’s CHD. “Randall reminded me that our baby could feel everything and that if we were going to see this through, I needed to commit to my and her overall health”. In and amongst their transfer to Netcare Sunninghill Hospital and their diagnosis by Dr Harrisberg, Randall had made contact with Boston Children’s Hospital in the United States. “I got through to a lovely lady who said that she would give our diagnostic info through to the specialist doctor… I never really expected to hear back from them, but four hours later, the doctor called and explained to me that ‘we have the best doctors in South Africa’ - that their doctors were trained by our doctors. This was really reassuring to hear. Plus he referred directly to Dr Harrisberh and Sunninghill Hospital.” Tracy had been scheduled for a C-section on the 30th of October 2013 due to the high risk of Nikita’s CHD. “We had been prepared that they would need to stabilize her as she arrived… we were also all unaware of how her heart had developed since our initial echocardiogram with Dr Harrisberg… so there was a lot of uncertainty surrounding her arrival. We knew that we wouldn’t be able to hold her immediately, that she would be taken to the NICU and there was concern that there was no circulation to her lungs, meaning no oxygen and no breathing.” In short, the Naidoos had no idea what to expect. On October, 28, 2013 (on the anniversary of her mom’s passing) Tracy went into labour and was admitted to be monitored. She pushed for as long as possible and on the 30th, gave birth to their second baby girl. “As she arrived, she was screaming and breathing, and we were able to hold her for a couple of minutes.” Unbeknown to Nikita’s medical team, three holes had developed between the right and left side of her heart, which had allowed oxygen to flow to her lungs. She was rushed to NICU for an echocardiogram and Tracy was wheeled back to her maternity room. “We waited and waited and waited and waited until my husband eventually couldn’t take it anymore and went to find out how our little girl was doing. We didn't want to disturb the medical team's processes… when my hubby arrived, Dr Harrisberg asked him what had taken him so long.” Nikita was stable, was under lights for jaundice and still had a couple of tests to undergo. “The three holes had saved her life. She was in a better state than her diagnosis four months prior,” shares Tracy, “Dr Harrisberg was completely shocked. He had thought and warned us that they may need to perform her open heart surgery immediately but after 3 weeks in NICU we were discharged and at home with our baby girl”. Even though the Naidoos had a 3 year old daughter at the time, they were intimidated and “scared” of doing something wrong. “We were afraid that we were going to hurt her. We weren’t sure how to handle her fragility”. Nikita went for a check-up one month after arriving home, and again at two months. It was at her two month check-up that she underwent a cardiac catheterization. “They wanted to see her heart from that perspective,” recalls Tracy, who explains that they were expecting her first op - a BT shunt, to increase blood flow to the lungs - to be when Nikita was about one year old. “We had time to prepare mentally… and we needed to prepare ourselves”. On the 18th of February 2014, the Naidoo’s three-and-a-half month old stopped breathing. “Thank goodness I was on maternity leave and my aunt was at home with me. We called my husband who rushed home and then literally flew us to Sunninghill Hospital. She was hooked up to oxygen, the staff alerted Dr Harrisberg and after he did an examination, turned to us and said, ‘she is having surgery now’. We were in shock and had no time to prepare. One hour later Dr Mamorare arrived and she was wheeled into theatre”. It was a 6 hour “intense wait” for Randall and Tracy. Their baby girl arrived in CTICU swollen and “it just looked painful. I don’t think anything can prepare you or that anyone can explain it to you. It is just different. I get emotional just thinking about it.” Nikita experienced a couple of challenges during her CTICU stay. Her diaphragm had been damaged during surgery and one of her lungs had collapsed, meaning she was fed through a pump in her stomach. “At one stage while her lung was collapsed, the team said to us, ‘if we can’t get her lung up, we don’t know what to tell you’. We were told to get ready to say our goodbyes. We arrived the next morning and her lung was miraculously up! The doctors were in shock, because they had done all that they could have. We could just see that that in itself was a miracle on its own”. After 26 days in CTICU, Nikita was finally stable enough to be held by her mom and dad. She was transferred to High Care and then to Paediatric High Care and finally discharged after 42 days in hospital. “She had lost her ability to suck and needed to relearn it again, and this time when we took her home we were even more intimidated… we felt like we had no idea how to treat her… we didn’t want to hurt her at her chest wound and she had her feeding tube in her tummy. We weren’t even sure how to carry or hold her.” Tracy shares that in retrospect, she had cared for her mom who had had cancer five years prior, “in a way, it kind of prepared me. God prepared me.” The Naidoos went through every single formula they could find and eventually struck gold. “We managed to fatten her up in time for her next surgery assessment. We needed her to thrive… and body weight is just better all round.” While at home and in between surgeries, Nikita contracted bronchitis. “She had a cough one day and a fever the next, which then escalated into bronchial pneumonia. We rushed her to Sunninghill Hospital. Had we come a day later we probably would have lost her… her heart was already failing. We still, to this day, give her medication for the bronchial pneumonia… it replaces her immune system and it’s only available at Sunninghill Hospital pharmacy”. Once she had recovered, she was booked in for a second cardiac catheterization. She was 10 months at the time and scheduled for her second op on the 20th of August 2014. “Two open heart surgeries in one year… she was strong enough for them. Dr Mamorare walked us through the Glenn Shunt procedure prior to surgery. It was a lot shorter than the first and after two weeks in CTICU, we were discharged and back home. She was a bigger baby and much stronger than before, so we just experienced fewer complications.” In early 2015, Nikita went in for her third catheterization to check up on her BT and Glenn Shunts. “We weren’t stressed at all. We knew the procedure by now, we knew she had a good team… it was just a standard thing for us. After leaving her, we went and grabbed a coffee”. 30 minutes after leaving Nikita, the Naidoos received a call and were told to “come now”. Nikita had had an allergic reaction to the propofol, which makes up the anaesthetic cocktail. “She was gone for eight minutes and thank goodness, her anaesthetist, Dr Murfin, had seen it once before so knew exactly what to do. He saved her life… had he not seen the signs and realised it was propofol, we would’ve lost her. We were shocked, as she had had it before and experienced no reaction to it… it is in every anaesthetic cocktail.” Nikita was still partially sedated and put into an induced coma to stop the swelling of her brain. “She was seen by a neurologist two or three days later, which is when we got the all clear. For us, it was another miracle that there was absolutely no damage… eight minutes is a long time. Randall and Tracy share that Nikita means ‘unconquered’, and an ‘unconquered warrior she is, with “her fighting spirit and calm nature. Even in pain she smiled through it all. She never cried. She was in pain but never showed it. God gave her will power and a fighting spirit to carry her through. She definitely didn’t get it from us, because we didn’t get to see her much. Only in visiting hours. We used to take turns sleeping at the hospital and staying home with our oldest daughter, Kayla.” After a challenging and miraculous year, Nikita saw Dr Harrisberg twice a year and was able to bring her chronic medications down from six to four. In 2019, Nikita was ready for her third open heart surgery, and her cath exam was now a stressful event for Randall and Tracy due to what had transpired previously. “We were on edge”. The Naidoo’s warrior was five years old at the time and had a better understanding of what was going on and why. “She was scheduled for her Fontan procedure in February 2019. Two days before her scheduled date, we were rescheduled for March as the hospital was full and emergency surgeries had come up. I was devastated, as I had already mentally prepared,” shares Tracy. “And I was relieved,” says Randall. Nikita’s third and final surgery was a success. “She was up and talking instantly and we moved quickly from CTICU to high care to being discharged. With the Fontan, there are a lot of drainage pipes - which we were prepared for - and each one is removed one at a time, so that the build up can be monitored. Nikita’s final drainage pipe was removed too early in retrospect. We were discharged just before Easter weekend. Nikita was not herself, had difficulty breathing and was uncomfortable which is when we realised that there was an issue. We arrived at Sunninghill, which is when they confirmed that it had been removed too soon, and she had to go back into theatre to have another drainage pipe put in. “As she has gotten older, it is much easier to determine when to rush her to hospital and when to self medicate with tried and tested medications and protocols… like temperature checking etc. From day one, we were strict, always just communicating openly about her condition and asking for distance if someone is sick. Covd has been another level of stress. The reality is that if she gets sick the chances are that she will go. We are not being negative, it is just what you carry on a daily basis,” shares Tracy. “Nikita thinks that she is physically normal… and that is what we also want for her, within limits. Prior to 2021, she was about six to eight months behind in her milestones, but she has just moved from a special needs school to an intimate mainstream school, where her condition is known and her health is taken seriously.” Tracy expresses deep gratitude for her company, Absa, who assists them with Nikita’s school fees out of their ‘disability fund’ for employee’s immediate family members. “We are so grateful to be able to put her in a better position for her future. We celebrate everyday with her because we don’t know what the future holds.” Nikita is celebrating her eighth birthday next week with three intimate birthday celebrations. “One at school, with family on Saturday and with two close friends on Sunday. We feel incredibly blessed. The Lord has shown us miracles and we are grateful every single day.” The Naidoos unconquered warrior is certainly a gift from heaven…

Pictures: Tracy-Lynne Naidoo (shared with permission)


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