Don’t Get Sick In Auckland
To My Son, Jacob O’Grady
3 August 1991 – 29 March 2007
Jacob was born with spina bifida, a neural tube defect, it literally translates to ‘divided spine’. When the embryo is being formed in the womb the brain stem fails to form correctly leaving a ‘hole’ in the spinal column, depending on where that hole is, and the nature of the defect, a number of nerves are left exposed or damaged, this condition occurs in the first four weeks of pregnancy. The reasons are unclear, research has shown that if folic acid is taken some time before conception the chances of a neural tube defect occurring are reduced significantly. The highest incidence of spina bifida occurs on the West Coast of Ireland, the Irish and their descendants have a higher incidence of spina bifida than any other ethnic group in the world.
On Jacob’s death certificate it states that he died of pneumonia as a result of post operative immobility. This statement is true but it doesn’t tell the complete story of the events that led to his death. Prior to 2004 Jacob’s fine motor skills and upper body strength had been deteriorating, upon examination it was discovered that a syrinx, a high pressure area of cerebral spinal fluid (CSF), had formed in his upper spine, near the base of his skull. This was compressing the nerves in that area and was the primary cause of the loss of upper body function. The solution to this was surgery, specifically a procedure called Foramen Magnum Decompression, or alternatively the syrinx could have been shunted directly. Shunted means inserting a catheter like tube into the area to release the pressure and provide an outlet for excess CSF. It was decided that a Foramen Magnum Decompression was the best option. Jacob underwent this surgery in February 2004, it was not successful. Instead he deteriorated significantly and he required a further 15 neurosurgical revisions. Jacob who had managed to learn to walk with assistance from a walking frame, could now no longer walk, over the next few months he underwent multiple operations.
Jacob was a patient of Starship Children’s Hospital. The nursing staff at Starship Hospital were excellent, with the odd exception. Of particular concern was the fact that Jacob was discharged too early on many occasions, he was deemed well enough to go home, only to be returned a few hours later and needing to undergo emergency surgery.
In the following months as Jacob’s condition deteriorated an agreement was struck after a meeting with the senior consultant in charge of Jacob’s care and multiple members of staff at Starship on an agreed care plan and how to best proceed with Jacob in future dealings. The charge nurse of the ward, who is no longer employed there, and who did not consider it necessary to attend the meeting, decided to unilaterally alter the agreement as it did not suit her. Jacob and his family suffered as a result.
Jacob would get well for a time and then decline rapidly, it was discovered that another syrinx had formed in his brain stem, just millimeters away from the one that had been shunted after the Foramen Magnum Decompression. It was decided to monitor Jacob closely and review his condition as time went by. On boxing day 2004 Jacob underwent further surgery, and again in January 2005, in February 2005 he had recovered well enough to travel to Australia, and he had a fantastic holiday on the Gold Coast in Queensland.
In July 2005 he had to undergo surgery again. Once again it was not successful, as Jacob was living in Hamilton at the time, Starship decided to discharge him into the care of Waikato Hospital. Waikato Hospital is an excellent hospital, unfortunately at that time their was no neurosurgical ward and little expertise in dealing with children with Jacob’s condition. Jacob was misdiagnosed and the prognosis was that he only had weeks to live. I had been insisting on a second opinion from Starship Hospital, and the manager of Surgical Services had agreed to arrange one. It took 13 weeks, and multiple requests, before a second opinion was given by a senior Neurosurgical consultant. The first time the opinion was given, no mention of death or dying was said. The Consultant had been unaware of all the chatter surrounding Jacob’s supposed date with the Grim Reaper. I asked him directly if Jacob was dying and he said ‘I can’t guarantee he won’t be run over by a bus, but he is not dying from this condition’. I immediately called the organisation that were providing palliative support to Jacob and his family. They came at once, private discussions were held, which I was excluded from, with the local Waikato Doctor and various members of Jacob’s family and it was decided that Jacob was indeed dying, despite what the expert told us, and shortly after, my sister found people having a serious talk with Jacob, and getting him to write his will. My sister intervened and put an end to that nonsense, she didn’t tell me the events of that day, I didn’t find out till much later.
I once again had to request a second opinion, and this time I would ensure that the relevant people would be present when the opinion was given. The MRI scans needed for the second opinion were lost in transit from Starship Hospital three times. They miraculously turned up when I informed the then Manager of Surgical Services that I would be arriving by car to pick the scans up myself and on my way back I was going to drop into Television New Zealand and TV3 and tell both networks of the sort of treatment Jacob was receiving. When they did arrive they were thumbnails and not adequate to make a proper assessment. However the consultant cast his trained eye over them, and some others that had been taken more recently at Waikato Hospital, and it was told to all present that Jacob would live. He was well enough to go home with me a couple of days later. We watched South Park the Movie and had a great laugh.
In March 2006 I moved to Auckland, two weeks later Jacob came to live with me permanently. Jacob had been holding his own for several months and was relatively stable, he suffered from ongoing headaches, significant hearing loss and his vision had become impaired. As one surgeon stated – he was stably unwell.
In May 2006 he became seriously unwell, he was admitted to Starship Hospital, they kept him in for observation, in the meantime they had reneged completely on the ongoing care agreement that had been made in 2004, no reasons were given. Jacob was deemed well enough to be sent home. His condition continued to fluctuate, some days he was OK, mostly he was chronically unwell. Jacob was admitted to Starship on multiple occasions over the next four months, they treated the symptoms, for nausea he was given the appropriate anti nausea drugs, for headaches he was prescribed pain relief. The consultant surgeon in charge of his care referred him to psychiatric care to see if there was anything that could be done for him. Fortunately it was determined that Jacob’ s feeling unwell wasn’t able to be treated by the Psychiatric team. At no time during this four months was Jacob given an MRI. CT scans were taken that showed the syrinx in his fourth ventricle had increased, but the surgeons didn’t consider it to be significant. In fact the enlarged syrinx was the primary reason for Jacob’s condition.
Jacob was scheduled to have bowel surgery, which would assist him in becoming independent as he progressed through life. Late September he was in Starship, and was about to be discharged, I asked if he was well enough for the surgery scheduled in Waikato Hospital, the registrar on the Ward said that in his opinion he was. Jacob was discharged that day from Starship, and I took him to Waikato Hospital in my van. On the way down the van broke down and I had to ask my sister to pick us up and take us on to Waikato Hospital . We broke down in Pokeno and Jacob and I had one of their legendary ice creams each while we waited for my sister to arrive. Later on in the day we arrived in Waikato hospital to find out that the operation had been cancelled, but no one had bothered to call and inform us. The cancellation took place as a result of one of the palliative care team assigned to support Jacob and his family had stated to the Waikato team that Jacob was unwell in Starship Hospital and wouldn’t be able to make it, this was a member of the same team that initially ignored the second opinion given that Jacob was not dying.
The operation was postponed for several weeks. He eventually underwent surgery and the operation was successful, afterwards he returned home to Auckland with me and a few days later he became seriously unwell, this time he was admitted to the Neuro Surgical Ward in Auckland Hospital. He was under the same surgical team, he was in a different ward and no longer part of the children’s hospital. Jacob became very ill, he lost all his strength, was not able to talk clearly, and became unintelligible, he went blind in one eye completely and could only see a few inches in front of him with the other, he lost most of his hearing and developed a severe scoliosis, he was vomiting, and was not able to hold any food or drink down. He was scheduled to have ongoing treatment for his recent bowel operation but was not able to attend because of his condition. The relevant ward in Auckland was contacted and they paid Jacob a visit on two occasions and a care plan was being developed, I was told, that would ensure he would be OK. I didn’t see them again for quite some time, When I did see them the site of his operation had fissured and his bowel op was no longer working. In the meantime Jacob continued to deteriorate neurologically. His Neuro consultant visited and asked if he had been vomiting, I said no, and he said he can go home. He seemed to miss the fact that he wasn’t able to eat, which in my lay person observation would have meant there would have been very little to vomit. I asked the consultant about an MRI, he said it wasn’t necessary, then he left. I was left speechless and feeling helpless. At this moment I believe the full weight of my Irish ancestry came to bear and I went looking for the consultant, he had disappeared through one of the security controlled doors that I had no access to. I went through the Hospital and came across a significant number of the Neuro Surgical Team at the lift on their way back from coffee. I explained to them that I was not impressed with the level of ‘Doctoring’ Jacob had been in receipt of for the last several months and that if they did not take significant steps to improve the situation immediately that I would be exposing them to the media with accusations of gross negligence. They were given the afternoon to lift their game. Later on that afternoon Jacob received an MRI and the most thorough examination from another Neuro Surgical consultant I have ever seen Jacob undergo. In his opinion surgery was necessary.
The surgery to be undertaken was very high risk, the alternative was do nothing and die slowly. Jacob underwent emergency surgery in the wee small hours of the morning on Labour Weekend. The operation was a success, Jacob improved dramatically, within a day he was singing, laughing and cracking jokes. He was in the best condition Neuro-wise that I had seen him in nearly three years. I had got my boy back!
Jacob was then discharged and transferred to the General Surgical Ward of Auckland Hospital, one floor below. The reason Jacob hadn’t been seen by them for a week or so was because they mistakenly thought Jacob had been discharged, as well as this there was a Doctor in Starship Hospital General Surgical team who knew Jacob well and when I asked the nurse to contact her about Jacob’s situation the Doctor ignored the request. I guess Doctor’s need time to have coffee too.
The General Surgical team were to sort out the complications to his bowel operation. As a considerable amount of faeces was oozing from the fissure it was decided to help reduce the output and give it a chance to heal that he would be put on a Parenteral feeding system. This is all very high tech. The ward has several posters with photographs of those qualified to carry out this procedure in several prominent places around the ward, it’s sort of like going into McDonalds and seeing those Employee of the Month signs as you order your Big Mac and Fries. Using the Parenteral Feeding System the stomach is effectively bypassed by placing a tube into one of your arteries and a cocktail of readily blood absorbable goodies is passed into your body. The tummy and bowel have a rest and the bowel is given a chance to heal itself.
I had not had much sleep for the previous few weeks as I needed to ensure that the Neuro team were doing their job properly, I was feeling reassured by the staff in this new ward that everything was fairly routine and that Jacob’s needs would be looked after, so I decided to go home and have a sleep. When I returned the next day Jacob was very uncomfortable and was complaining of a full bladder. (Jake needed help with emptying his bladder) I had left instructions with the staff in writing as to what was required in regard to his toileting needs. These instructions were completely ignored and Jacob was left with a seriously full bladder for several hours. Not only was he extremely uncomfortable, but his bladder was at risk of perforating. The staff were clever enough to take my complaint seriously and Jacob was not left with a full bladder again for the remainder of his stay.
In the meantime the faecal oozing only increased, which was opposite to what I was told would occur. Jacob was confined to the bed as a consequence of the feeding tube in his neck, and despite multiple requests for a suitable mattress, which were all ignored, he began to develop bedsores and was showing signs of congestion in his chest. I had been talking with Waikato Hospital about the situation and as soon as Jacob had been discharged from Auckland hospital (deemed well enough to go home) he was admitted to Waikato Hospital. He was treated very well there, they got on top of his congested lungs immediately, made sure he had a suitable mattress and solved the faecal oozing problem by administering an enema which relieved him off the constipation he had been suffering from for the past few weeks. The ‘high tech’ parenteral feeding treatment was a complete waste of time, and Jacob had been discharged from the Auckland General Surgical Ward in a far worse condition then when he had been admitted.
Jacob recovered well from the neurosurgery, he continued to improve over the next few months, he no longer needed a cocktail of drugs that kept pain and nausea at bay. His strength continued to improve. He was able to transfer himself from his wheelchair into his bed, something he had not been able to do for over a year. He had once again become a happy young man. In the McLean Centre, Mount Roskill Grammar School, there is an excellent gym. Jacob could often be found there working out on the weight machine. His strength had improved to the point where he was starting to walk again with help from a walking frame. He had not been able to walk in nearly three years. He still had not recovered to the point he had been prior to the Foramen Magnum Decompression surgery in February 2004, but all indicators appeared positive. We had every reason to be optimistic about his future.
In late February 2007 I noticed that his energy levels had diminished, he became very tired in the afternoons and was happy to go to bed after coming home from school. On March 7 an appointment for an eye test was scheduled. Jacob attended and it was found that his eyesight had deteriorated significantly from a test taken a few months earlier. The eye specialist was baffled as to why this could be. His hypothesis was that a shunt was blocked. Within an hour Jacob had begun to vomit. We went to Auckland Hospital and he was admitted.
Two of the neurosurgical doctors examined Jacob and theorised that his left ventricular shunt was blocked. Jacob had had this shunt inserted many years earlier and it thankfully had not caused him any trouble since 2001. I was relieved to hear that this was the problem, as the surgery entailed to revise the left ventricular shunt is relatively low risk compared to a shunt revision at the base of his brain, or fourth ventricle area, the area which had caused him so many problems in the previous three years. A CT scan was ordered and reviewed, and it was decided that the best course of action was to operate to relieve the pressure. The CT scan did not actually show that there was a problem with the site of the proposed surgery, but when combined with the symptoms he was displaying it seemed best to proceed with the surgery. The symptoms he was displaying could have easily been caused by a blocked fourth ventricle shunt as well. I signed a consent form for the surgery to proceed, and all that was required was for a time slot to be made for it to proceed. Surgery was scheduled the next day, by this time the hospital had lost the consent form and another one had to be signed. Just before they took Jacob through for surgery he said to me that he didn’t want it, I reassured him that everything would be OK, and that this surgery was simple compared to what he normally had. I said goodbye, and Jacob, the tough kid that he was, looked at me defiantly and gave me the finger.
Jacob came out of surgery, I joined him in the recovery room, he was more sluggish than normal and was not responding as well as he should have, I questioned the nurse as to what pain relief he had been charted, she stated morphine. I stated that morphine has often caused Jacob problems in the past, and that I had discussed my concerns with the Doctors and that another pain relief such as fentanyl should have been charted. She momentarily appeared concerned and then stated it, referring to the morphine, had been charted and proceeded to administer another dose of morphine. Jacob was discharged into the High Dependency Unit (HDU) on the Neuro Surgical Ward, he never became fully conscious and the next morning he slipped into a stupor, a near coma. A routine CT was ordered and this time it was discovered that the left ventricular shunt was well and truly blocked, Jacob underwent emergency surgery, and the original shunt was reactivated. There had been nothing wrong with the left ventricular shunt, it was not blocked, the surgery he had the day before had caused it to block, the emergency surgery unblocked it.
Jacob bounced back from his two surgical procedures, but continued to display symptoms consistent with a fourth ventricle shunt blockage. He continued to deteriorate, experiencing growing paralysis and severe head pain, he was administered morphine and had to be resuscitated. It was then decided that anything stronger than panadol should not be given. The surgeons were confident that he was recovering well, despite all his symptoms showing otherwise. He was kept in the ward for observation and moved into his own room. His pain continued to grow worse and his vision and hearing deteriorated significantly, he developed a severe scoliosis of his spine and his speech was becoming unintelligible. Jacob was in bed most of the time, on two occasions we went for a walk in his wheelchair to the café and hung out with the other patients, staff and hospital visitors. He would grow tired very quickly and needed to return to his bed for rest. I had been speaking with the Doctors when they did their morning rounds and voicing my concerns that the symptoms he was displaying were as a result of a blocked fourth ventricle, while I was not fobbed off as callously as a few months earlier, and they were well aware that I was well aware of what bad press could potentially do their reputations, they were cordial and stated that the MRI actually looked better than it had a few months ago, When I suggested that they weren’t comparing apples with apples they asked me to explain. I stated that the MRI of a few months ago was taken when Jacob was acutely unwell and that it showed an enlarged fourth ventricle, they agreed. I went onto state that the most recent MRI shows an enlarged fourth ventricle, but not as severe as the last one taken a few months ago, they agreed. I asked if it could possibly be that, post surgery a few months prior, the syrinx had all but disappeared because the operation was a success, and now what you are seeing is a syrinx, not as severe as earlier scanned, is now there as a result of a blocked shunt, it just hasn’t progressed as far as last time. They had no coherent answer. I lamented the fact that Jacob had never been given an MRI when he was well, as that would have been a good reference point to draw a baseline from. I suggested they take another MRI so they could indeed compare apples with apples. My suggestion was not acted upon.
Jacob continued to deteriorate to the point that he was not able to lift his arms, he was moved back into HDU for close monitoring. The pain medication he was on was not sufficient for him to find relief. Over the weekend his condition deteriorated, he was in intense pain, and my patience with the surgical team all but evaporated. On Sunday evening I insisted on an MRI, this request was flatly refused, instead an MRI was scheduled for later on in the week. On the day of the MRI Jacob went into a deep sleep for many hours, he awoke about 30 minutes before the scan. By the time of the MRI he actually seemed to be improving significantly. The MRI showed that the syrinx had collapsed around the shunt and had virtually disappeared. The registrar stated that this is the baseline needed to draw any future comparisons with. It appeared that the shunt in his fourth ventricle had unblocked itself, and the pressure had been relieved.
Jacob continued to improve, within a couple of days he was out of HDU and back in a room on the ward, His strength had improved, along with his vision and hearing, he was able to hold his food down and was off IV fluids. I was expecting to take him home in one or two days. That morning when the Doctors were doing their rounds one of them noticed Jacob was experiencing difficulty breathing, an X-Ray of his lungs was ordered and it was found he had acute pneumonia, the prognosis was that he had three days to live, he survived another eight and died peacefully in a room in the ward, surrounded by his family on 29 March 2007.
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The death certificate stated that Jacob died from pneumonia as a result of post-operative immobility. What it didn’t state was that the first operation was a mistake and caused his shunt to block, the second operation was to reverse the damage caused by the first. The post operative immobility was as a result of his fourth ventricle being blocked which caused him to be paralysed from his neck down for a substantial period at a critical time post op.
The same Surgeon who performed his last two operations performed the one in October 2006. He saved Jacob from dying then. As a result of the successful operation Jacob enjoyed a quality of life that he had not had for several years.
The Consultant that Jacob was under all his life was the one primarily responsible for Jacob living as long as he did, he saved his life on a number of occasions. Without the multiple surgical interventions performed throughout his life, approximately 30, Jacob would not have lived past his first birthday.
I believe the February 2004 Foramen Magnum Decompression was a mistake, and it was this operation that eventually led to Jacob’s death. I don’t believe any surgery should have been performed, Jacob’s condition should have been monitored closely and if he showed signs of a life threatening condition then a decision to operate or not could have been made then.
My advice to all parents of children in similar circumstances is to obtain a second opinion prior to any surgery required, and make sure you have very strong support networks around you for the duration.
Jacob wrote a rap song a few weeks before he died, I will leave you with his words.
Dad is trying to make it better I want to die the reason I don’t is beacause Dad and Mum really love me and they will miss me… I feel like killing myself now every fuckin time people look and laugh I fuckin hate that now I get headaches all the time I cant get back to how I was and I want to… I cant go back there now because the fuckin doctors fucked me up
RIP Jacob
Lawrence O'Grady