‘He will remain in a vegetative state for the rest of his life and you will be his sole carers’
We look at the doctors face, blankly.
‘Do you have any questions?’
We say nothing.
Following 24 hrs of sheer horror the nightmare then escalated to an apocalyptic tsunami.
Dav had wheeled me down the long disinfected pungent corridor of the hospital to the Neonatal Intensive Care Unit (NICU) at Leeds General infirmary to visit Arjun as he was hooked up to life support machine. We thought he was going to be ok. We thought at this was just routine after such a difficult birth and that he would be discharged once the excess fluid (hyrdrops) had been drained. We were so wrong.
It soon materialised that he had had a major brain injury. His brain was drowning in blood. He was literally being killed internally by his own organ; his brain.
A few medical facts; Hydrops occurs in a small percentage of the worlds population, with only 15% of those born with hydrops actually surviving. Hydrops is when the tissues in the body is filled with fluid (oedema) ; the body appears to be like a water balloon, waiting to be popped. The only thing is, this cannot happen, instead the fluid either is drained or your organs drown in the fluid.
Non-immune hydrops is the more common type of hydrops. This type includes all other diseases or complications that may interfere with how your baby manages fluid. This is what Arjun was diagnosed with. His prognosis was not hopeful.
Arjun’s body was drained.
It is unclear whether he had the brain injury prior or post birth, or once the fluid had been drained.
His head circumference expanded over the preceding 48 hrs as the blood and fluid from his brain haemorrhage consumed his brain cavities destroying the grey matter like maggots eating away at an apple. His fontanel bulged like a water balloon, to touch it slugged and squelch in an inhumane manner, all the while Arjun fought for his life and every breath whilst the life support machine pumped away. I will never forget the beeps, flashing lights and alarms of NICU. The manner in which the nurses and doctors ignored some of the beeps whilst as an onlooker you panicked and frantically searched for suitable explanations for all the flashing lights and noises. I suppose for the nurses and doctors these became like white noise; for parents they were deafening sirens. It soon became clear that everyday Arjun was deteriorating, each brain scan revealed further damage. There was nothing that could be done.
It is pretty amazing how the protective mechanisms kick in. It was even more remarkable how Dav took the reins and protected not only Arjun but me. I was mentally deteriorating. My body could not cope with the changes, the surgery and the hormonal imbalances, but to exacerbate the feelings further I was falling deep into a depression that would consume our lives for ever. I began to reject Arjun, my motherly instincts were nowhere, all I could do was the physical, change his nappy, cleanse and bathe him. I felt very much like a failure, that somehow I had caused Arjun’s fatal injury and that all I was good for was pumping my breasts for milk.
By now I was feeling more and more isolated, unable to truthfully reveal my inner pain and dying emotions. The black cloud had truly taken hold and I was alone with it.
Meanwhile, Arjun was slowly weened off life support and made his journey through each step out of The Peter Congleton Unit at the LGI. It was a little like graduating. Firstly he moved from NICU to HDU then to the nursery section.( I make this sound so easy and pain free but it wasn’t, so many medical issues had arisen that I am not sure I could jot them all down). This really meant nothing to us because we knew he wasn’t coming home for months, he would need to be transferred to Harrogate Special Care Baby Unit first.
To be honest, the doctors had hinted that we would never take him home. The doctors had actually told us he would not survive.