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"Challenges help make us who we are meant to be" - A Story about Emily and her CHD

Emily’s journey into the world was not exactly what her parents, Melissa and Nigel, were expecting after a very smooth pregnancy and uncomplicated birth with their first born child. Melissa was 25 weeks pregnant when the Moodley’s received the heartbreaking news. “I went for my normal check up with my Obstetrician, Dr K Kyriazis and she was concerned because Emily was not putting on as much weight as we expected. She suggested we see a specialist in Pretoria for a more specific analysis. The Specialist confirmed that there was a problem with Emily's heart development, however she could not pinpoint the exact nature of the problem and referred us to [paediatric cardiologist] Dr Jeff Harrisberg”. With the assistance of Nigel's brother, the Moodley's were very fortunate in securing an appointment with Dr Harrisberg that very same day.

Dr Harrisberg ran a few check-ups before diagnosing the Moodley’s unborn baby girl with Transposition of the Great Arteries (TGA). A rare condition in which the two main arteries leaving the heart are reversed. “Of course, we were devastated when Dr Harrisberg diagnosed our baby with TGA. Dr Harrisberg also informed the Moodleys that their little girl would need to undergo her arterial switch operation as soon as she was born provided she met the minimum weight. From the moment of diagnosis onwards, Melissa’s greatest challenge was to remain healthy in body and mind so that Emily could grow to the weight she needed to be. Melissa shares tat a key to dealing with this was to remain calm and free from any added anxiety. Hence the Moodley's decided only to inform a select few for ongoing support and prayer. "I told myself that I have to be calm and that I should not get overwhelmed. My husband did not take the news well and I had to be strong for the both of us”. But Melissa’s journey to arrive at this space within herself and her pregnancy was riddled with doubts… “at first, because we have limited medical understanding, we thought that maybe it was genetic or that we had done something to cause Emily’s defect such as not being healthy enough. However that was not the case - it is just one of those things completely out of one's control.” On the 10th of July 2016, at 33 weeks gestation, Melissa started with severe cramps, which she had had with her first born, “but no matter what I did, they were not subsiding”. The Moodley’s called the hospital who advised that they come in immediately. “I was admitted and a lot of that time was a blur to me. I was on a lot of medication… I even recall being given steroids to help Emily grow as much as possible in a short space of time. I remember the doctors struggling to decide if we should leave Emily in the womb to grow or if I should go for a C-section. Emily was barely weighing 2 kgs but she needed to be at least 2.7 kgs to undergo her op”. The Doctors had not yet come to a decision about the C-section, but Emily was ready to arrive! Melissa went in for an emergency C-section on the 13th of July following a complication. Emily was born weighing 1.86 kgs. “They placed her on me, so I got to hold her for a few seconds, and then she was rushed off to Neonatal ICU and I only saw her again after a few days. Even then, I couldn’t hold her because she was so tiny and had to be in the incubator where she was connected to so many machines” but the Moodley’s were grateful to just be with their baby girl. “She was three days old when she went for her first angioplasty procedure, where the Doctors widened the VSD valve to ensure that it did not close as per normal, but instead allowed for the mixing of oxygenated blood. The procedure was a success and it is also when Doctors became aware that on top of her TGA, Emily also had tachycardia, or an irregular heartbeat”.

Emily was too small and weak to feed on her own and was fed Melissa’s breast milk via nasal tube. “I remember us keeping track of her weight… one day she would put on 10 grams, the next day lose a few grams. We just wanted her to grow so that she could have the surgery and be on the road to recovery. I knew other ladies who were also pregnant who had their babies around the same time and had taken them home. My son was having a hard time understanding why she wasn’t home yet… he wanted to meet his baby sister. “It was a real struggle to gain weight,” says Melissa, “as Emily started growing and getting stronger, she was switched to bottle feeding in order to achieve her ‘sucking milestone’ but she would get exhausted and burn off the weight she had gained. As much as we hated the nasal tube it was helping her and we were on a race against time… we needed her to gain enough weight before she was 6 weeks old to undergo her op”. Dr Harrisberg motivated that Emily’s nasal tube be put back and soon enough she gained the weight she needed. She was 2.5 kgs when Cardiothoracic Surgeon, Dr Erich Schürmann, said that he was happy to do the surgery. “By God's grace, on the 25th of August 2016, the day of her surgery, Emily woke up weighing a miraculous 2.7 kgs and went in for her open heart surgery - an arterial switch. The operation was a success,” shares Melissa, "after the surgery we got to see her for a few minutes and we were so grateful for that and at the same time it was heartbreaking to see her connected to countless tubes and the ventilator. Her wound also had to remain open to allow for the swelling to subside. To see your newborn child like that is indescribable. One of the most vivid memories of her days in CTICU was post removal of the ventilator, when she cried we could see her tears rolls down her cheeks but there was no sound as she had temporarily lost her voice. “Emily was in CTICU` for a few weeks and moved to paeds on the 11th of September to be discharged on the 15th of September. We still had to be cautious because of the risk of infection but it was such a relief to have her home with us. All the things we once took for granted, and most parents complain of - like sleep interruption because your baby is crying at night - we were so grateful to finally have that. Emily gave us a different perspective. She finally got to meet her big brother (Ayden) who prayed so earnestly for her healing. She remained on medication for a year for her tachycardia. After no episodes at home, Dr Harrisberg took her off the meds. We were anxious that the episodes would start without the meds but it was all fine”. Following on from her surgery, Emily underwent 4 CATH procedures in 2017, 2018, 2019 and 2021. In 2021, her ballooning was unsuccessful as the scar tissue from her 2016 surgery had calcified. This meant that further angio procedures were no longer a viable option, leaving another option heart surgery the only route available for Emily. Dr Harrisberg suggested to us that Emily undergo a second open heart operation where Dr Schürmann would remove the calcification and replace it with a synthetic patch.

Emily has just undergone this op on the 28th of February 2022. “This time around was more difficult emotionally as Emily is older and more aware. She knows the hospital and remembers her experiences. She is used to her usual check ups with Dr Harrisberg because she knew that she wouldn't have to stay over at the hospital”.

The Moodley’s decided not to tell their little girl that she was undergoing a second open heart surgery as to protect her from the anxiety it could cause. “We needed her to be calm so we told her that she would be seeing Dr Harrisberg for her checkup. When hearing this she was actually looking forward to seeing him as she was familiar and comfortable with the echo check up. So going into the theatre she knew that she would be seeing Dr Harrisberg soon. “A few hours later she was out and Dr Krishnee Naidoo informed us that all went well and that the surgery was a success. We knew that Emily would be confused about her wound so we advised the nurse in CTICU to tell Emily that she did go for her checkup with Dr Harrisberg and that there was something he needed to fix, which he and the other Doctors did fix, and now she would get better soon and be stronger than ever. “Dr Krishni Naidoo, Emily’s anaethetist, told us that she went to visit Emily in CTICU. Emily had just woken up and was groggy and told her how much she loves Dr Harrisberg and that she wants to see him”. Two days later, Emily’s wish came true. She visited Dr Harrisberg for an echo before being discharged to go home. “We were amazed at her recovery,” shares Melissa who expected her to be in CTICU for at least one week. “Emily was a bit wobbly when she stood for the first time after her surgery in paeds and by the time we got home, that same afternoon, she was dancing and jumping around… Since then we have been trying to keep her from jumping and running around, to avoid her falling and hurting herself. It's a challenge but we just want to keep her safe till she recovers fully.

“When you see Emily you would never know she has gone through all this in her short life span. She is bubbly, happy and energetic and we love that about her. She has been so brave through all her experiences and she surprises us often. She has been recovering very well physically. She is also talking more about the situation which helps us to figure out what she remembers and what she needs help with. She has been through so much and sometimes we won't even understand how that affects her. All that we can do is be patient and let her know that we are always here for her.

“The challenges have been tough but they help make us who we are meant to be. This journey has made us appreciate things we take for granted so often. Nothing could have prepared us for what we have faced when we decided to have a second child. Prayer, trust and having faith in God have been so important to see us through. We are also blessed to have a wonderful family who have been there to support us.

“We are so happy that she is recovering so well and that her procedure was a success. Dr Schürmann, Dr Naidoo, Dr Harrisberg and the whole rest of the team in CTICU as well as the Paeds ward (I wish I knew all their names)... they are amazing at what they do and we are so grateful for the care and support they have given us.

“My husband says, we are so fortunate to have found out about Emily's situation when we did. We met so many couples outside the CTICU and some of them only found out at birth. We built some amazing relationships. As much as the doctors offer amazing support, connecting with people that are in situations where their baby has the same defect is helpful and eases you somewhat when you can relate to another person's experiences/ challenges. Welearnt so much from others in similar situations as well and have kept in touch with one family in particular whose son had the exact same defect as Emily.” We are nearing the end of our conversation when Melissa shares that she carries guilt for the fact that Emily has not been back to school since the beginning of lockdown. Little Emily starts crying in the background… She's sad she isn’t back at school. “It’s okay, my sweetheart, we can drive past your school later and say hi to all your friends,” says Melissa. What sounds like crocodile tears dry up quickly. This wild little heart warrior is full of life and loves it when a plan comes together.


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