A Big Boy with a Hidden Battle
Milan was born on 5 January 2023, weighing 3.64kg and measuring 53cm — a strong, beautiful baby boy. But within minutes of meeting him, our paediatrician told us he was struggling to breathe and needed to be taken to NICU. He was placed on CPAP support until the following day and discharged home on 7 January with what sounded like reassuring news: he had a Ventricular Septal Defect (VSD).
We were told that often, the louder the murmur, the smaller the hole. It didn’t seem urgent. We held onto that hope.
But over the next few weeks, Milan’s breathing became heavier. At four weeks old, after an ear infection and concerns about poor weight gain — only about 10g per day — we knew something wasn’t right. You could see and hear how hard he was working just to breathe. An urgent cardiology appointment was booked.
When Dr Liesel Andrag performed his echo and ECG, we learned his VSD measured 8mm and he had developed pulmonary hypertension. Medication was started immediately, along with fortified feeds to help him gain strength. But despite every effort, Milan began losing weight. At seven weeks old, we were told he was going into heart failure and needed surgery urgently.
When your baby uses all his energy just to breathe, you realise how precious every single heartbeat truly is.
Eight Weeks Old and Fighting for His Life
Milan was admitted to Christiaan Barnard Hospital. On Thursday, 2 March 2023, at just eight weeks old, he underwent open-heart surgery. Handing him over at 07:15 that morning broke something inside us. We waited in silence, holding our breath, desperate just to hold him again.
At 11:30, we were told he was out of surgery and being settled in PICU. Walking in and seeing our tiny baby covered in tubes and wires, ventilated and sedated, was the hardest moment of our lives.
During surgery, the true severity was revealed. Milan’s VSD was not 8mm — it was 15mm, the size of a walnut. A previously undetected PDA was also found. Dr Susan Vosloo closed the VSD with a membrane and clipped the PDA. His operation was a success. Now, he just needed time to heal.
For days, we sat on the ninth floor, staring out at the harbour, listening to machines beep, waiting for our boy to wake up. Slowly, one by one, the tubes came out. By day 13, we had a smiling, cooing little boy again. No one would believe he had undergone major heart surgery just two weeks earlier.
Today, six weeks post-op and three months old, Milan is thriving. Medication has stopped. Breastfeeding has resumed. He is gaining 30–40g per day, rolling, laughing at his sister, and filling our home with joy.
We know healing takes time — a 15mm hole is enormous — but we take this journey day by day, step by step. We are deeply grateful to the incredible teams at Louis Leipoldt and Christiaan Barnard, and to every family member and friend who prayed and supported us.
Our hearts are full. And our future with Milan is bright.
Nicole Wilson
