Thursday, March 27, 2014

Ben's story

This is the story of Ben. A beautiful, happy and sweet little boy from Ireland. His story will not leave you unshaken.  I can't find words to introduce this story to you, but all I know is that the whole world deserve to know about Ben, and one person at a time, maybe change the world?

The story is told by his father, Bryan. 

Little Ben Canty was 3 when he suffered his first stroke. On the 15th January 2010 myself and my wife noticed that my two year old son was limping slightly on his left hand side. We put it down to nappy rash. The next day my wife noticed that he wasn't using his left hand much and would do so only when asked. He found it a struggle. We went to see our GP next day. He was definitely getting worse. The doctor thought it was a hip infection and the hand was failing because of the leg but sent us to the hospital for an X-ray in case it was bacterial. Within twenty minutes we had seen a junior doctor, a senior doctor, the A&E consultant and then a neurologist. We knew instantly something was seriously wrong. I stood behind Ben while the consultant spoke to him. He asked him to smile and when he did this he asked me to come round and look and was his smile always like this. I nearly
collapsed. The right hand side of his face was normal but the left hand side was sagging. He was instantly rushed for an MRI and within two hours we were told he had three Cavernoma’s on his brain; two small and one the size of a euro coin. That one unfortunately had bled. He had suffered a stroke.

We were transferred to Temple Street Children's Hospital in Dublin, Ireland for surgery but after two days of various neurologists checking his MRI, the surgeon decided not to operate because it was to close to the brain stem. He said the risk of paralysis was too great and would only operate to save his life. Throughout all this, Ben was his normal self, always happy, looking to play and cause the usual two year old mischief. He didn't seem to realise anything was wrong. We transferred back to our home town and Ben was kept in hospital for a further two weeks for intensive physio. It was then decided to move Ben to an outpatient as he was very cranky in the hospital and this was felt to be detrimental to his recovery.

After four months, Ben was 90% recovered after physio on his face and legs and occupational therapy on his hand. After two weeks he was able to lift his hand involuntarily, and this was a fantastic moment. He never complained about all the work he had to do, we turned them into games.That year he progressed so much. He was full of life. Unfortunately on the 21st we noticed that the pupil in his left eye was abnormally large. There was no inkling of any weakness like the first bleed but we brought him to A&E at the University Hospital in Cork. We explained Ben’s previous history and that he had three Cavernoma’s and one had bled previously. Ben was examined and we were told there was no issue and all was okay. We insisted on an MRI and after we spoke to his neurologist she agreed. The Cavernoma that had bled previously had bled again, had increased in size and was blocking the valve that drained fluid from the brain. It was decided to send Ben to Temple Street hospital in Dublin again so that a shunt could be fitted. We travelled that evening by Ambulance to Dublin and met with the same neurosurgeon, Mr John Caird, who had decided not to operate the previous year because of the dangers. He said that the Cavernoma was the size of a ping pong ball (his words) and after speaking to some colleagues in the UK felt he had no choice but to remove the Cavernoma, which was located on the brainstem.

Ben had surgery for over six hours on the 1st and been a success and that they had got most of the Cavernoma. There was still a little remnant left but he didn’t think this was going to be an issue. When we spoke to the anaesthesiologist after she said it was the most amazing operation she had ever been involved with. When they got to the Cavernoma it literally popped out, that the Surgeon didn’t even have to do much cutting to remove it. She said it looked like a Blackberry. Ben was released from hospital a week later and so far we have had no major issues as a result of the operation. He had sight difficulties as a result but various ophthalmologists have said that he was too young to accurately gauge the extent of these problems and will have to wait until he’s older to test him properly. He still had a lot of weakness on his LHS and wore various implements to help him. He wore a DMO during the day and a cast at night to of Feb. When we met the surgeon afterwards he explained that the operation had correct his ankle as this turned when he had a bleed. They also found two more Cavernoma’s when he was in Hospital but like the two he had left after the op, these are small and don’t seem to be a problem. He had been to see the Neurosurgeon three times since the op and on the last visit in July of that year he said he was very happy and would not have to see him again for a year. We felt like we won the lottery. He still saw his neurologist every three months and she was very happy with his progress.

When he left the hospital we were told because of Ben’s history, he would be prone to seizures and were told what to do if he had one. Ben continued to blossom and as he got older and we began to see in him the young man he was becoming. He never had any further problems since the operation and bar the sight difficulties, which didn’t seem to be a major problem, he spent most of his time playing and enjoying life to the full. He never had any seizures so we started to settle down and become a normal family. The 7th like any normal day, Ben went to school, came home, did his exercise, then went out to play. After his dinner that evening I brought him upstairs for his hour of wind down time before he went to bed. We would spend the hour doing a few exercises and then playtime. We played snakes and ladders that evening as we did most nights and he won as he did most nights, with a little bit of cheating I might add. He went to bed at 9 and I read him his usual stories and we did our usual 5 minute show with his favourite teddy, Elmo. I sat on the bed with him, as I did every night, until he drifted off. He fell
asleep around 9.30pm.

I was heading to bed around 10.40pm and as I ascended the stairs, I heard him vomiting in his room. My wife and I  went to him quickly and lifted him out of the bed and started to change his bedclothes. He was shaking a little at this stage but we put it down to him just waking up and being a little cold. We brought him into our bed, gave him some juice as he was still coughing a little, then lay down with my arms wrapped around him to get him warm. We asked him was he okay and he said he was ‘grand dad’. After a minute or 2, his shoulders started to jerk upwards and when I switched on the light, I noticed his eyes had turned up. My wife immediately rang for an ambulance and they kept me on the phone while my wife held Ben in our bed. The ambulance took around 40 mins to arrive and all this time Ben was still seizing. After the ambulance crew placed him on oxygen, I was told to carry him to the ambulance. My wife went with him to the local hospital while I followed in the car. He was taken to the resuscitation are of the A&E and they started to administer 4 types of anti-seizure medicine to try get the seizure to stop. But none of them worked. All the while we were sitting there as a team of various doctors did their utmost to stop it but nothing worked. Eventually they told us that they were going to have to ventilate him, which was basically to place Ben in a coma. When they did this, the jerking stopped and Ben was stable. However the seizure had lasted for 1hr and 40mins in total. He was taken to the intensive care and attached to various probes. They said they would monitor his brain functions for 2 days before they did anything.

We sat by his bedside for 24 hours, watching the monitors and trying to make sense of what was happening on them. At 2.30am the next night, we were called to a meeting with a hepatologist and told because of the amount of anti-seizure medicine that had been given to Ben and the fact that his temperature had risen to nearly 42deg C before he was stabilised, it had damaged his liver and they were concerned over this. They decided to send him to a specialist paediatric hospital in Dublin where they had a children’s ICU where his liver function could be monitored better. He travelled for 4 hours through the night and we followed him by car. We stayed by his bedside in the new hospital and the blood tests they took every 2 hours showed his liver function was getting worse each time. The next afternoon we met the Neurologist who said that even though Ben seized for nearly 2 hours, that his brain function looks okay and they would do an MRI to check it.

However the next doctor to see us was the hepatologist and he gave us the shocking news that if Ben’s liver continued on its present course, he would have to have a transplant. We were totally shocked. His liver was perfect 2 days earlier. We were told he would have to be transferred to Kings College hospital in London to a specialist neurological and hepatology ward. Ben was transferred by ambulance to the main airport and transferred by specialist medical flight while we followed on a commercial flight. It was a major job getting him transferred and this took a few hours. He arrived at the hospital at 4 in the morning and we arrived about 20 mins later. Over the next 2 days Ben’s liver got progressively worse until on the Saturday, we filled out forms to put him on the transplant list. He could have got a transplant that evening.

When the registrar went to put his name on the list, we met a nurse who said that he wasn’t going for a transplant. We were shocked. Nobody knew what was happening. We waited by his bedside for an hour asking various health professionals what was happening but no one knew. When the registrar returned, she had a smile on her face and said that he wasn’t going on the list as the latest blood test that was done showed that his liver had made a slight improvement. Over the next 24 hours Ben’s liver had virtually returned to normal. That evening, even though he was still ventilated, he moved a few times and fluttered his eyelids when my wife asked him to open his eyes. We were already talking about our trip home, how he would need intensive physio but at least we were getting our little boy back. However, that evening they decided to ease off on the sedation to see what would happen but unfortunately, to our horror, Ben started to seize again. They increased the sedation again and that night, around 2am, the neurosurgeons installed a probe in his head to monitor his brain functions and to get a better idea of what was happening. We were told not to talk, touch or stimulate Ben in any way and they would monitor him for the next 48hrs and then make a decision.

We sat by his bedside for 2 days while we watched the figures coming from the brain monitor. We were told a good brain function was 5 on the monitor while a 40 was bad. When they switched on the monitor he was at 25 and it started to creep up slowly. Over the next 2 days they would give him medication which would bring it down to 15-16 but after a few hours it would slowly start creeping back up again. After 2 days they said they would do a CT scan and then make a decision. When the neurologist came back to the ward, he passed us and went to the head of the department. I saw him touching the back of his head and then shaking it and I knew then that our world had fallen apart. He came back to us, closed the curtains and told us there was no hope. That Ben was clinically brain-
dead and the ventilator was keeping him alive. I will never forget that moment as myself and Elma collapsed onto the bed and hugged him as tightly as we could.

After an hour, we spoke about organ donation as we knew they were going to ask us. We agreed that Ben would donate his organs as he was in the same position a few days previously when he needed a Liver. We kept him alive for a further 24 hours as a team of people from the organ donation team starting matching his organs with children that needed them. My wife slept with Ben that night in the hospital bed as he had slept in our bed every night for the previous six years. The next day, Ben was taken to the hospital theatre. In a room just outside, he was placed in our arms with his favourite teddy Elmo and they removed the ventilator while we sang his favourite song, Hush Little Baby. After about 2 minutes my wife told me to look at his lips, they were turning blue. After about 4 minutes we had to let our little darling go and he was brought into the theatre so that he could help other children.

When we got back to the ward to our family, it was without doubt, the worst time of our lives. We did speak to a member of the organ donation team and while they couldn’t tell us much, they did say that an 11 year old girl in the north of England was on her way to a hospital to get his Liver. We now know that he helped 4 children including 2 young babies and an adult so far. This might be a help to us in the future but not now. We travelled home the next day and Ben followed us home 2 days later, when the legal paperwork was sorted. We buried Ben the following Wednesday after a nice service where his school got heavily involved by way of music and readings.

Ben was buried in the local cemetery about 2 miles from where we live and I go to see him twice daily, once in the morning and once in the evening. I don’t pray there, I just talk to him and tell him what’s been happening.

What I wouldn’t give to hug my little buddy again but it’s not to be.

Giving life is just a click away. 

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  1. Thank you for making his journey here on earth a grand one.

    I too am an organ donor.

  2. My heart goes out to you, what a beautiful boy x

  3. Karen O ' ConnellMarch 28, 2014 at 8:12 PM

    Beautifully written Bryan. So poignant, your heartbreak is tangible. Extremely courageous, fair play to you. Love Karen.

  4. My heart goes out to you both. I can't even begin to imagine you loss. Gods Love will sustain you. I wish you well.

  5. Bryan and Elmo, I know how lonely you are. Small Ben is a big loss to all who encountered him. What you did was amazing, and hopefully one day will give you some small solace. Tric kearney, mum to Caoimhe.

  6. There is a typo there, apologies Elma for referring to you as Elmo!

  7. Heartbreaking your stenght is an inspiration at your darkest hour you thoughts of others is unbelievable we will carry donor cards from now on . God bless you . You have an angel in heaven looking down on you .

  8. Your courage and strength astounds me. Part of little Ben lives on in others. May god bless you both