Joseph’s Story – The Diagnosis

The doctors decide to keep Joseph in high dependency over night ‘we won’t operate tonight’ he says ‘I think you should both go and get some rest’. I stand paralysed. I do not understand what is happening. I can’t leave my son; we have not been separated since he was born. Joseph needs me to sleep next to him, he needs me to feed him, he needs me and I need him. A nurse approaches and gently tells me that ‘she will feed him tonight’. Just like that. It is my job to care for him but tonight he needs more and just like that I am replaced by machines, a nurse and a bottle.

We are walked out of the ward. I am walking away from my son and every part of me is screaming to go back….RUN BACK …PICK HIM UP…CUDDLE HIM…LOVE HIM. A security guard walks us down what feels like endless corridors, across a cold car park and we arrive at Scott House. The security guard keeps telling us how lucky we are to be staying in Scott House. I do not feel lucky. We are given a room and I make a secret vow myself that I will not return home without my son. At this time I do not realise how important Scott House will be to us as a family.

We barely speak, barely sleep, we can’t eat. We return to the ward to be told that Joseph is undergoing more tests today to understand if he has a pulmonary artery. I am not a doctor or a scientist. I try to remember distant biology lessons in school. I chastise myself for not listening in class. Why couldn’t I have paid more attention? Why was I passing notes with my friends? If I paid more attention I would understand. I would be a better mum if I understood.

The doctors draw pictures of hearts for me with labels and arrows pointing to the issues. I do not understand but I say that I do. I hope Alec does, I am relying on him to translate it for me.

We sit by Joseph’s bed and my emotions seem to change every two minutes, fear, hope, despair, jealousy, fear, fear, hope, fear. We decide that we must be positive and only give Joseph positive love and energy. I talk to him constantly and we make plans for the future. I promise to show him the world, to take him to Australia and see the kangaroo’s, to get him his own dog. I promise to try and make his life brilliant, full of fun and love. I make these promises with only one demand on him – that he try’s his hardest and keeps breathing.

Joseph’s condition is confirmed as tetralogy of fallot with pulmonary artresia. A catheter lab procedure is attempted but fails. We discover that Joseph does have a pulmonary artery but it is the width of a piece of hair and closed. This is Friday, we are all given the weekend to recover and open heart surgery is planned for Monday.

With our very own broken hearts we take Joseph to surgery. My husband and I do not talk, we pray, we think, we cry. There is nothing to say, we just wait. Two hours – no news. Three hours – no news. Four hours – no news. Five hours – no news. Six hours – we have a phone call and are asked to wait in a small room by intensive care; the surgeon wants to talk to us. I hate this room. We see the surgeon, he is smiling. Joseph has survived.




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