Alive & Kicking

“First let me tell you that your baby is alive”

Ten words that will stay with me for the rest of my life.There were other words as the surgeon told us about Harry’s condition but not many that I remember to be honest. What followed was the worst night of our lives, as we faced the very real possibility that we might not get to see our little boy open his eyes again. Our little boy, who in his short life had already shrugged off open heart surgery at four and a half months. Our little boy, who filled our lives with so much joy and happiness. This couldn’t be happening could it? This is the kind of thing that happens to other people, the kind of thing that you see on television. But that’s always made up. Always dramatised, always creatively enhanced to get you on the edge of your seat. Perhaps, but this time the seats were ours and nothing was being creatively enhanced.

Harry’s latest sojourn to RMCH began on Friday 14th September for what was supposed to be a routine operation to correct his defective lower intestine. Harry was born with Hirschprung’s Disease so an operation was necessary to remove the defective part of the lower intestine and attach the remaining lower intestine to his anus – a ‘pull through’ operation. This operation was being combined with the reversal of his colostomy, performed when he was 9 days old to bypass the defective section of his lower intestine. Bearing in mind that Harry had recovered from open heart surgery so quickly and had been discharged after 6 days (after an initial expected stay of up to 4 weeks), we saw no reason to doubt the predicted 5-6 day period of recuperation. Recovery seemed to be starting so well – Harry was taken from the operating theatre to the ward where his surgeon pronounced the operation a success. Finally, we could start to enjoy the next chapter of Harry’s life, free from his colostomy bag and, more importantly to us as parents, free from any more scheduled surgery. Three operations under general anaesthesia in nine months being more than enough thanks.

Our relief was short lived however. As Saturday progressed, it was obvious that Harry was  increasingly uncomfortable. Early in the morning any discomfort was put down to a normal reaction from the surgery but as the day went on it became more and more apparent that there was something wrong. Fortunately Harry’s nurse refused to dismiss Livvi’s protestations as those of an over-anxious parent and basically frog-marched a surgeon to have a look at Harry’s abdomen. Over the next days and weeks it dawned on us that that nurse and that surgeon saved Harry’s life that afternoon. During that afternoon under the surgeon’s supervision, various options for Harry’s discomfort were ruled out until it became obvious that whatever the problem was, it was getting worse. Eventually Harry’s pain and discomfort increased to such a level and his abdomen distended to such an extent that the only option was to take him back to theatre and perform more surgery to discover the problem. Make that four operations under general anaesthesia in nine months, two of them only 24 hours apart.

What I do remember from that awful night is being told that for forty minutes on the operating table, Harry’s blood pressure was so low as to be unrecordable. Therefore it was a distinct possibility that there may have been some neurological damage (hospital euphemism for brain damage so as not to scare us further I think). What form this may take, and indeed the extent of it, only time could tell.

Between Livvi and I, we have had some personal tragedies to endure, but the night of Saturday 15th September will go down as the hardest. In a windowless box room in the bowels of the hospital, we spent the night curled around each other, not wanting to close our eyes, let alone go to sleep, just in case the phone should ring. The feeling of helplessness that night was overwhelming, the only emotion one of fear, no matter how positive we tried to be. The only calm that I felt was in the first few seconds of being awake after a catnap, swiftly replaced by the sinking realisation that this wasn’t a nightmare that I had escaped from by waking, this was real and very scary.

Harry had gone into massive septic shock as a result of the surgery and the best way of treating him was for the doctors to take over his body for him and let all of his energy and strength be expended on fighting the infection. This involved Harry being put into a chemically induced coma and put onto a ventilator so that he wasn’t even breathing for himself. In those early days, at any one point Harry was on up to 9 different medicines and pumped so full of fluid to keep his blood volume high enough that he became so engorged that he was almost unrecognisable. There are no words to describe how hard it is to look at the shell of your child and wonder if you will ever see him open his eyes again.

Harry : ICU Day 5

Harry : ICU Day 14

Five days into his recovery, as his sedation was being weaned down, Harry started to have seizures. Almost certainly linked to the massive insult that his brain took as a result of the septic shock, these seizures were a very real manifestation of our worst fears of possible brain damage. Characterized by fluttering eyes and then tremors in his left arm and leg, they were a precursor to one of Harry’s many setbacks. Just as we were beginning to think that we had got through the worst, Harry’s health took a nosedive and we spent another weekend wondering if he would pull through. Put on yet another medicine, this one to control his seizures, Harry was sedated again whilst the flood of medicines fought off the infection that riddled his little body.

Harry spent a further two weeks in the Paediatric Intensive Care Unit (PICU) as one by one, his monitoring leads came off and his intravenous lines were removed. The biggest step was the removal of the ET tube and the ventilator. Finally, this meant that Harry was strong enough to breathe for himself and it was the last step before being discharged from PICU. It is now two weeks since Harry was discharged from PICU and so far we have had no reason to think that he is going to need to be readmitted (the small matter of a partially collapsed lung notwithstanding).

It is amazing to think how far Harry has come over the last five weeks, and I am astounded every day at how strong our little boy is – it is easy to forget that he is not even 10 months old. There have been times over not just the last five weeks, but throughout Harry’s short life, when it has been very easy to think ‘Why us?’ or ‘We are so unlucky’ but the more time that I spend in and around the hospital I realise that we are blessed with an amazing boy that we are two of the luckiest parents in the world. Everyday I see so many children that have chronic and debilitating conditions and yet are so happy and carefree that it puts many of us to shame.

I hope that in the coming months and years I am able to keep this thought with me.