Roki start to life
Sitting down to write Roki’s story is not much fun at all. You are asking me to relive the saddest and most terrifying moment of my life. That moment of complete silence when what you should be hearing are the cries of your newborn child. The silence was deafening and that fear for the life of your child and the sight of his limp body is forever engrained in my mind.
Roki changed all our plans. Myself, Dave and our little girl, Ruby, had our lives wrapped up and shipments ready to go and start a new life in South Africa where we would live with my mum and spend some much needed time with her as she enters her golden years. Life was good and we were looking forward to learning how to restore pianos, take over mums business and watch the cows walk by as we sip tea on the verandah. The estimated departure date was to be 6 weeks after the birth of Roki.
“We will do whatever it takes to fix him. We owe it to him”
Never did it occur to us that there may be complications, Ruby was ‘The golden child’ and like with Ruby, we had a perfectly seamless pregnancy with Roki, surely nothing can go wrong. We were told that we were good candidates to try for a natural birth after having a cesarean with Ruby. It seemed like an attractive option to us as we liked the idea of having more than two children. Why stop at two? We love having Ruby around and surely having at least four to make sure your house is always filled with love and laughter sounded like a very good idea. Having four cesareans sounded like a terrible idea to me. So we were assured by the midwives that I will be closely monitored and should there be any warning signs then an emergency cesarean will be done. We decided to ‘have a go’ as it meant that we may be able to have more children. Good idea right?
“Roki’s heart rate deteriorated very fast”
I went into spontaneous labor, all was good until the midwife decided to manually break the waters. Roki’s heart rate deteriorated very fast. I was rushed to theatre. Dave was told he cannot come in. I was told I will be put to sleep. The next minute they pulled him out, I wish I had been asleep. Roki’s head had gone through the tear of Ruby’s cesarean scar. It was a full rupture and a very rare occurrence we were told later. He could not breathe and had no pulse. In the time he was resuscitated he suffered brain damage. He came back to us after 2 minutes and I was able to look him in the eye. He looked so scared, small and quiet. He was alive.
When asked what to call our son we commented that no other name but Roki will do, for he had a rocky start. Smiles all round from the 17 people in the theatre. Go Roki.
“…the doctors carefully broke all the bad news to us”
Roki was put on ice for 3 days. Literally. To prevent any further brain damage they cooled him. This meant that he was lying in the open, he was cold, he was alone. We could not hold him. He had a mass of wires and tubes attached to him. I spent my days rubbing his head and singing and talking to him. Those three days were dark days. I do not remember much other than aching to pick him up and tell him how sorry I am, I am sorry Roki. I broke your life. The guilt was unbearable. It still is.
Roki continued to give us reason for hope. On day one we were told that Roki’s brain trace was not very promising and his prognosis looked very grim. By day two there was an unexplained return of almost ‘normal’ trace on the monitor. By day three Roki was breathing by himself. On day seven Roki had a MRI scan done. We were told that results were not as bad as they initially thought. The word Cerebral Palsy was mentioned as he had some significant damage in the basal ganglia area that controls the gross motor movements in his body.
“Smiles all round from the 17 people in the theatre. Go Roki”
As the days and weeks went by the doctors carefully broke all the bad news to us. It became clear that not all of the damage was visible in the MRI results. His reactions and development proved to be more severe than predicted. He may not talk, suck, eat, walk, see etc etc. We continued to believe that he may and we still do. We could cope with all the bad news but the hardest thing remains the daily pain and discomfort he suffers from his severe muscle spasms.
Roki spent 6 weeks in hospital and finally came home to us on the 9th of August 2013. We were a family once again. I could hold Ruby again. I could lean on Dave for support and bury may face in his arms when the sadness overwhelmed me.
Roki’s daily life is not easy. He is on very strong medications to help with the pain and control of his muscle spasms. When he has a short break he will look at me and flash me a smile. When I touch him and talk to him he responds with a lovely ‘coo’ and a very wide smile. It gives us hope that behind all the pain and medication our little boy is still in there. He needs our help. We will never stop trying to help our boy. We will do whatever it takes to fix him. We owe it to him.
– Ina Mills