Alletta - Grace was born on 23rd June 2009, on a cold winters evening, several weeks premature and weighing in at 2.4 kg. After two weeks at home, she became deathly ill with pneumonia and it was here that the journey into the greatest series of heartaches began. Our days in hospital stretched on to weeks and then months. From sleeping on the freezing cold floors of Northdale hospital, to the corridors of Greys Hospital and their cardiac unit. Our journey eventually took us to Inkhosi Albert Luthuli Central Hospital. At just 2 months of age, Doctors would work around the clock trying to get a proper diagnosis as to what was wrong with this child’s heart and organs. Endless days turned into nights of excruciating pain, overwhelming sadness and finally the words every parent dreads to hear;

 “There’s something wrong with your baby’s heart”

This sentence to a new parent is fuzzy at first, and then later accompanied by questions, “why” ‘why me” why my child? What did I do wrong?” and thereafter placed on the statistics list of another Congenital Heart Defects page. Devastation and confusion followed us each step of the way.

My child was then placed on life saving medication, which I had to administer every 3 hours. I remember those days of just looking into my child’s eyes and encouraging her to never give up, to breathe, to relax and it was as if she understood my cries and pleas to just hang on. All this while, we became familiar with the halls of Albert Luthuli and was treated with such kindness by the Paediatric Cardiology staff. Her diagnosis was finally confirmed;

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• A complete Atrio ventricular septal defect ( she had no septum that divides the 4 chambers of the heart)

• An enlarged heart since birth

• Patent Ductus Arteriosis: after birth the ductus arteriosis normally closes within two or three days. In Premature babies, the opening often takes longer to close. If the connection remains open, it’s referred to as a patent ductus arteriosis. The abnormal opening causes too much blood flow to the baby’s heart and lungs.

On 10th November 2009, at just 4 months old and completely underweight, at 3.1 kg, she underwent her first open heart surgery which lasted 8 hours. I was warned of the severity of her diagnosis and that chances of survival were very slim. I remember how my child fought, how her will to live made me stronger each day. She had a complete AVSD (atrio ventricular septal defect) repair done, along with a PDA (patent ductus arteriosis) ligation done.

The surgery was a success and saved my child’s life. Alletta was placed in the Cardiac intensive care unit for 3 weeks, still attached to the ventilator and machines and tubes attached to her tiny body. I was so afraid in those first few days after surgery, but my child remained in good hands by the best intensive care unit staff who never wavered in their dedication towards my child.

We were then moved to high care and from there back to the ward. We stayed there till the 20th December 2009 when we were discharged.

Alletta was weaned off any heart medication and never needed anymore since. Her healing took months but the courage that my little girl had and still possesses puts some of to shame.

We continue our cardiac reviews and we are very grateful for our journey with the best cardiac team. Her surgeon was always honest with me from the very beginning and to our Father God in Heaven for always allowing my child the Grace to overcome a premature death.

We remain positive and grateful and we are always advised that further intervention will be required and we still remain firm in our faith in the surgeons and cardiologists who bring about the healing that we often ask God for.

This journey is not for the faint hearted and I have a child who barely complains about anything. There are many miracles associated to Allettas life, too many surgeries to even mention but through it all, she has endured such pain, such horrible invasive treatments, yet she remains the one that I love the greatest of all. This child taught me how to trust, to appreciate the medical staff and all their sacrifices and how to never ever give up. This journey does not end, it gets bitter and sometimes we do things begrudgingly, our emotions are all over the place with so many questions that we will never get some answers to but the one thing I do know is that I will never wish this journey on anyone, and I will never trade it with anyone for it was mine and Alletta’s journey designed for us alone. Till this day, we will never understand why all of this happened, and perhaps we were never meant to understand.