So today, the 1st November, is three months to the day that Isaac died. He passed away on the 1st August 2012 at 6.56pm at the age of 5 days and 5 hours. In his short life it appears that he has had a massive impact on people and their lives. His memory has already resulted in a massive amount of money raised for the Evelina Children's Hospital, and hopefully by running the London Marathon in his honour and memory we will be able to raise a lot more money for the hospital and in doing so continue the amazing work being undertaken at this hospital in pioneering treatment to save seriously ill babies.
This blog entry, is to tell Isaac's story, the lead up to his birth, his life at North Middlesex and at St Thomas's. Some of what's in this blog, you may find hard to read, but I feel that I need to tell everyone as much as possible about Isaac's life through my eyes, to show the strength he showed us, to highlight the care he received. As a warning, this is an incredibly long blog, but please do have a read. I also need to say, that at present there are a number of investigations about to start at North Middlesex hospital surrounding the birth of Isaac. Therefore I want to say that what I'm writing here are my personal views. I'm sure reading this, you will have questions about why what happened happened, and hopefully in the coming months we will receive these answers as without them it is very very difficult for us to get closure. We know that Isaac can not be brought back, God I wish more than anything there was a way that he could, but we know that that is not possible. For us what is important now, is to find out whether anything needs to be changed so that other parents do not have to go through the incredible pain and suffering that we have gone through in losing Isaac.
This is the story of Isaac Colin Smith x
Isaac was conceived through a form of IVF at Homerton hospital in East London. It was the second course of IVF that we had been through, and I still remember early in December getting the phone call from the hospital that Simone was pregnant. After years of heartache and pain in us wanting a child, finally we were there, we were pregnant and the future that we had long hoped for could finally begin.
In the coming months, we prepared. We didn't tell many people as we didn't want to tempt fate. Because of the fact Isaac was conceived through IVF, medical history and Simone's Rheumatoid Arthritis, we were placed under Obstetrician care at North Middlesex Hospital and this meant that unlike most couples going through pregnancy we had LOTS of scans, every four weeks and as we got near to the date that Simone was going to be induced (so that the hospital could keep control of everything) these became every two weeks.
We'd spent lots of money at 'Baby Shows', read books, washed all of the baby clothes, set up a wardrobe with everything our baby would need, built drawers in our bedroom for all of our babies clothes (we had decided early on we were not going to find out the sex), put the flat up for sale as we knew a one bed flat would not be big enough, and even swapped Simone's car from her beloved Fiat 500 to a slightly larger car for our baby. We'd gone through a set of NCT classes and had met a lovely group of friends who we were excited to go through the final stages of pregnancy with and our futures with our new borns in the coming months. We were ready and as we passed 36 weeks we started to relax that all was going to be ok and excitement continued to build.
On 27th July 2012, we went along for our final scan. At 37 weeks plus 5 days we knew that our baby was basically at full term. Simone had been suffering a bit of pain that morning, but we believed it was just wind. The scan seemed to take longer than normal, we mentioned the pain Simone was in, but nothing seemed to be wrong. I still remember sat there, holding Simone's hand watching the scan screen and saying to her "just think, next time we see our baby we will be holding it in our arms". Little did we know what was about to happen.
As we walked out of the scan room, Simone suddenly stopped and said, somethings just happened. She thought her waters had broken, so we rushed to the nearest toilets so she could check what was going on. As we were getting there, she felt another gush and was quite certain what was going on. But as she emerged from the toilets and said to me, its blood, we knew something wasn't right so headed straight back to the maternity triage centre. Although we knew blood wasn't a good sign, we'd just had a scan, we knew our baby was ok - everything was going to be fine.
In the triage centre Simone continued to bleed, she was asked to go and take a urine sample - when she came back it was just blood, she'd had to get the cleaners to the toilets as she had bled all over the floor, our concern levels were increasing, but everyone else seemed to think there wasn't an issue. Isaac's heart beat was being monitored - we commented it was significantly lower than we had ever seen before (125ish instead of the normal 150s), but there was no real concern it appeared. A doctor assessed Simone and there was mention of a potential partial placenta abruption (we didn't know what this was at all), but as the scan had been clear, there still didn't seem significant concern. An hour after arriving in triage we were moved to the maternity ward for further assessment and monitoring.
Our babies heartbeat continued to seem to slowly reduce, and our concern levels were increasing. Another doctor assessed Simone and broke her waters - there was no going back now, our baby was going to be delivered today. From this moment, everything became a blur and happened so quickly. The waters had been clear, but Isaac's heartbeat started to become more difficult to monitor very quickly. The decision was made to do an emergency C-Section and roughly an hour and an half after arriving in triage we were taken down to theatre. It was at this moment we knew things were going very wrong.
I will never ever forget the look of the obstetrician that was in the theatre. She hooked up an ultrasound, and the look on her face showed me all I needed to know - hearing her say there's no heartbeat, sent a horrible shiver down my spine, we were told that they were going to need to do an emergency general anaesthetic C-Section and I was taken out of the room by a nurse. I didn't even get to kiss Simone to wish her good luck, all hell had broken out in front of us, and as I was taken out of the room and put in a side room on my own, it felt like my world was falling apart. Minutes later I heard sirens going off and people running past the room I was put in, I looked out, but couldn't see anything, I just knew that those sirens were crash sirens, and felt so helpless. Soon Simone's Mum and sister turned up, and I phoned my Mum to update her, and we all sat and held our breath.
What seemed like an eternity later the paediatrician on duty came to see me and took me away. He explained what had happened. I was a father, and my wife was stable, but my son was very ill. He had not had a heartbeat when he was born at 1.26pm. They tried to resuscitate for 18 minutes, and in the final checks after deciding to stop resuscitation, they found a feint heartbeat. He almost sounded apologetic, and then I found out why - Isaac had suffered potentially significant brain damage due to lack of oxygen at or before birth, he had needed a blood transfusion, many drugs. Simone had lost two litres of blood and had suffered a placenta abruption. I was incredibly lucky to have both Simone and Isaac still alive. I was taken into theatre where they were still working on Simone, and, Ive never told anyone this, when they took me in there and I saw Isaac with probably 10 medical staff with him, and probably 40 staff in the room (I couldn't see what was going on with Simone at all) I could contain my emotions no longer, collapsing in tears, being held up by one of the male nurses.
Isaac was taken to intensive care, and I was sat down with the family to explain what had happened. We were then taken to see Isaac, but before this was possible I was told more devastating news. Isaac had started to fit, in my eyes this was good news, as it meant his brain was working, but it appeared not - it meant the brain wasn't working properly and confirmed that brain damage had occurred. We were told that Isaac was going to be transferred to a specialist hospital when they found one with available beds to undertake brain cooling to stop further brain damage.
Simone was still in recovery and I hated that I was with Isaac and she wasn't. At this time, I hadn't given our baby a name. We had decided early on that if it was a boy, he would be Isaac Colin. Simone had always had the name Isaac since she was young as the name she wanted for her baby boy, and Colin was my Dad's name, who passed away suddenly while playing tennis four years ago. This may found stupid, but knowing that Isaac may not survive, I didn't know whether to name him yet or not, and wanted to talk to Simone before we agreed. I spent probably 20 minutes with Isaac, it wasn't easy - he was fitting continually, all limbs moving. He was perfect though, he was very long, seemed to be a big baby, but he was covered in wires, in an incubator, being sedated to try and control his fitting.
Simone now awake, I went to see her, and had no idea what to say. All she would say is where is my baby, it was heartbreaking. I had to explain that he was very ill, and was in intensive care, but the staff were doing everything they could for him. The paediatrician came and spoke to her about what had happened, and he was very honest with us - we had to prepare for the worst, Isaac was likely to die. Our lives that had started like any other day were now in absolute freefall. Isaac had shown us such strength to even manage to start his heart after such a length of time, we knew he was the ultimate miracle, but we needed him desperately - this was everything our lives had been leading to, and he was so very ill. Only a few hours after her C-Section Simone got out of her bed and was wheeled to see her beautiful baby boy. It was our first time together as a family, and was so so special, but so hard, and so painful seeing this beautiful baby boy struggling so much to survive for us.
At 6pm the ambulance arrived and it was time for Isaac to be transferred. Simone had to stay at North Middlesex until she was well enough to travel, so Simone and I said our goodbyes, I promised to look after Isaac, and prayed that he would fight so that Simone could spend more time with him, but my God it was so hard having to leave Simone. London traffic was chaos - the Olympics were starting in just a few hours, and it was quite a journey to St Thomas's hospital seeing how people react to blues and twos - I wasn't allowed in the back of the ambulance so was in the front with the driver.
At this time, I sent a message on facebook - needed everyone to pray for Isaac and for Simone, and the response was incredible and continues today with the facebook likes to the Running 4 Isaac page etc.
Once at St Thomas's Issac was taken away to be settled and to start the brain cooling treatment. I was put in a side room and sat with the consultant in charge for a good hour whilst she explained everything to me. She put me as much at ease as possible and discussed a trial that Isaac could be put on. She first explained what was wrong with Isaac. I can't remember the scientific name if I'm honest, but the basics were that as a result of the placenta abruption, Isaac had gone without oxygen, leading to potential brain damage. She used a very simple example to explain what was now going on. If you cut yourself, your skin cells around the cut swell to protect the area. If you suffer brain damage, the same thing happens with the brain cells around those that have been damaged, however, with the brain, this causes further cells to be damaged. The initial damage - that's irreparable, this secondary damage, can be reduced through brain cooling, reducing the body temperature to 34.5 degrees C and leaving the body in this state for three days. Its a technique that has been used for about 3 years, and has proved successful.
At the same time we were offered the chance to put Isaac on a trial. As well as the brain cooling Isaac would be given a level of Xenon gas in his oxygen supply, to act as a sedation and protect the brain further. Its a new trial the hospital was running, and only a few babies had been put on it, but, there were no negative side affects. It all felt very much like a race against time, I had documentation to read and with Simone not being at the same hospital we had a number of phone calls before agreeing that we would put Isaac forward to the trial - anything that these guys could do to help, we had to do for Isaac. Isaac was accepted on to the trial and that evening the treatment began.
The nurses at St Thomas's gave me a room where I could spend the night and it had an amazing view over the Thames to the Houses of Parliament. Sat in the room before being allowed to go and see Isaac it dawned on me that the Olympic opening ceremony was about to start (strange the things you think of) and this was re-enforced when the Houses of Parliament were lit up and turned into a big screen showing footage of the history of the Olympics. What then happened was the start of a regular routine - spending time with Isaac.
Once settled, I got to sit with him, in one of three intensive care rooms, each able to hold 6 babies. What was very noticeable from the start, every bed had a seat at the end and a table, and a nurse permanently with them. I was introduced to the nurse on duty with Isaac that night, and to the wider team that would be looking after him. They made me feel very much that they were a team that weren't just there to help Isaac but to help his family through this very difficult time. Over the five days we got to know the individual nurses that looked after Isaac very well, and will be eternally grateful for the amazing care and attention they gave Isaac, their pure aim to make sure he was as comfortable as possible.
The brain cooling suit took a bit of getting used to - it was basically a white suit with lumps through it which pumped water round the suit lowering the body temperature. In fact that wasn't all that took some getting used to. Isaac was no longer in an enclosed incubator which meant we could touch him, kiss him, hold his hands etc. That was lovely, but then there were also the wires - everywhere, coming out of his belly button, his hand, probes attached to his head measuring brain activity, monitors everywhere. Over the coming days we learnt a little bit about what all of these meant. What was very noticeable though, was that there was definitely brain activity, but Isaac was still fitting - no where near like he had been at North Mid, but still fitting, and the brain activity that was there - the doctors were very quick in explaining that it wasn't what you would call normal brain activity.
So began the first long night, regular calls to Simone who didn't sleep all night and was having problems at North Middlesex where she was asked if she had any frozen embryos which obviously sent her into a frenzy that her baby wasn't going to survive. My Mum and brother had joined me at St Thomas's and all we could do was spend time with him, feeling extremely helpless. The nurse that first night said stroking his arms, talking to him, all could help and although it felt very silly at first, what else could I do, so that's exactly what I did.
The following morning, after very little sleep I got to have another chat with the consultant. She informed me that Isaac was stable, the Xenon had had an affect, the fitting had reduced considerably and now consisted of a gasping reflex where it looked as if he was trying to breath for himself occasionally (although this wasn't the case), the brain activity had diminished due to the sedation and that she was confident that he would at least survive his time in the cooling suit. It was the first positive I had heard, but had me wondering straight away - what happens when the cooling suit comes off, and with Simone at the other hospital, I was desperate for her to make it over to St Thomas's. As it appeared did the nurses, who as the day went on kept asking if we had heard anything. I continued to be in touch with Simone, but as the day progressed and the time that she was supposed to transferred was moved further and further back, I became increasingly concerned. She was dosed up very high on morphine apparently to reduce the pain she was in, although, the 'situation' was also a reason given for giving her so much. It led to some pretty distressing calls as the day went on with Simone, as the worry increased that she wouldn't get over that day to St Thomas's.
For Isaac, that Saturday was a pretty quiet day, as the day went on he was taken off his sedation as the xenon seemed to be doing enough to stop the fits and the feeling was quite positive. The family all came at some point to see him and Simone finally was transferred over around midnight and finally we were together as a family. That night was strange - Simone was like I was the night before, not sure what to say or do, whether it would be ok to touch him etc etc, but we talked about what I had done during my time with him and it was second nature to Simone very quickly. What I saw was a mother with so much love for her son, and I prayed he was going to make it through so we could have a future as a family.
As the Saturday night/Sunday morning wore on Isaac started to fit again - the Xenon trial only lasts for 24 hours, so as this was working out of his system the fitting got worse, with the gasping again, and his arms moving quite a lot. It was a worrying sign for us, and the sedation was restarted to stop the fitting. What we found out at a later date, was that the other two babies that had gone on the trial had had the same responses when they came off the Xenon. But at the same time, we saw the first sign of something to grasp onto. When the gasping fit would start, Simone would put her hand on his chest and gently rub it telling him he was a good boy and the fit seemed to instantly stop. It may have been coincidence, but to us it was the first real sign - he could hear us, and the words good boy he would have heard many times in the womb when we would call our dog a good girl. It was a feint hope but it was something to hold onto.
As morning came, there were other signs. At first we weren't sure if we were imagining them, but as time went on they became stronger. Putting a finger into his hands, you could feel him starting to grip. If you stroked your finger across the base of his foot, he would wriggle his toes, curl his foot and kick out slightly as if he was ticklish. We all took these as positives and would repeat the touches just to make sure that it wasn't just coincidence again. Isaac's blood pressure remained good, his pulse was good and as we spent our first day together as a full family, we felt like things were really starting to get better.
Unfortunately, that was not the case. We will always believe that those touches and reactions were Isaac telling us he knew we were there. To us that meant there was brain activity that was positive. That evening our consultant took Simone and I into a side room and had a very honest chat with us. The reactions from Isaac were more likely to be reflex actions not caused by brain activity. And although to us the fact his heart rate, blood pressure etc was good, as our consultant put it, they were too good. When he fitted, his heart rate didn't change - when anyone moves in any way that heart rate should change. It could have meant that the brain was not able to talk to the heart properly, and with the heart being a muscle, it would just keep going. We were told that we should be prepared that some day in the future, the worst was likely to happen. We didn't want to believe it, after all, the positivity of the day, it really did feel that he was getting better. We discussed it at length and decided the most important thing for the time being, just in case, was that Isaac should be christened and it was arranged that the following morning that would be done.
We spent the rest of the day reading to Isaac, bringing some of his toys to him so that he had them to be cuddled up to. His favourite book was Guess how much I love you and we read this many times to him, as well as the Hungry Caterpillar, a Children's Bible and a number of other books. The phrase "Love you to the moon and back" will at some point be my next tattoo and we have also made sure that Isaac's gravestone has a moon on it as the book and phrase became very important in his short life.
Monday was a big day for Isaac and for Simone and I. Firstly, we had Isaac christened Isaac Colin Smith in a small short service in the intensive care unit. His nurse that day Debbie was there along with our families, and the hospital pastor christened Isaac, gave him a candle, and a wooden cross, which has stayed with him ever since including to his final resting place. Sounds stupid, but we had family photos taken at his christening. To us this was important, a christening is a very important occasion, and one we should have been having at our local church, St Cuthberts, but instead it was held at St Thomas's. The nursing team had even cleared that part of the intensive care ward, had cordoned the area off with screens so we had some private time for the Christening. It was very emotional and very special, and my brother, and Simone's brother and sister were named as God Parents to Isaac. We also had a new consultant for the week, and he went through everything with us again and gave his views on Isaac's current condition. They were the same as we had previously been told.
As the day progressed, we got to hold Isaac for the first time. Something we never thought was possible given all of the wires, and my God it was so incredibly special, even though he was on a bed pillow still, for Simone and I to hold him, to be that close to him and protect him after feeling so helpless all the way through this process, was so special. Simone also got to change Isaac's nappy that evening, something not at all easy given the wires, but again the nurses at St Thomas's were incredible, helping, supporting and making sure we were involved in every part of Isaac's life.
Monday evening, the brain cooling treatment came to an end, and a nervous wait began as over the next twelve hours, Isaac's body temperature was brought back up to normal, with everyone unsure how he would react and whether the fitting would get worse. What is evident from everything we have seen and been told, the brain cooling worked for Isaac - brain damage did not appear to get considerably worse over the time he was at St Thomas's. The crucial issue was the initial brain damage as had always been the worry.
With very little sleep, as we wanted to spend as much time with Isaac as possible, we would go back to Simone's room for the odd hour sleep, but wanted to spend as much time with Isaac no matter what the time of day, and once again St Thomas's were so helpful, we could come and go whenever we wanted, and whoever the nurse was that was caring for Isaac at that time would always greet us with a smile and have a chat about how Isaac was doing.
Isaac's fits did not get any worse, and by the early hours of the morning, Isaac was out of his brain cooling body suit. What we suddenly realised, seeing Isaac just in his little nappy was how incredibly long Isaac was. He had weighed just over 6Ib at birth, but was over 50 cm long. Over night I had the pleasure of changing Isaac's nappy as well, and we continued to read and just spend time together as a family.
We were very aware that as Tuesday began, Isaac was going to be going for an MRI scan now that he was out of his brain cooling suit. This would determine the level of brain damage, and we sat in nervous anticipation as a family, waiting for a number of hours for him to return from the scan. The scan results were back late in the afternoon and as we sat with the consultant, it was evident things weren't good. Despite what we saw as positives, the gripping in Isaac's hands, the foot movements, the reaction to Simone's voice, the results were certain. Isaac had suffered catastrophic brain damage from the lack of oxygen at birth. All sections of Isaac's brain, the grey matter, the white matter, all were damaged. There was no way that Isaac was going to survive. Our world suddenly fell apart knowing that our little boy was fighting so hard for us, and the medical team fighting so hard for Isaac, but was not going to be able to survive.
The consultant explained that what needed to happen now was that we should spend as much time with Isaac as possible, he was very honest in that he didn't care about any other family members, just us and us having time with Isaac. He also explained that we needed to think about when the inevitable happens, when his oxygen should be removed. We couldn't quite believe that we were even having this discussion, but were told that it was just a matter of time. We wanted to see if Isaac could keep fighting for a few more days and in our minds decided that we didn't want it happening before Friday - that way Isaac would have been a week old (No parents should ever have to go through this thought process - its not logical, and just shouldn't happen). By the afternoon the nurse on duty explained that Isaac was starting to struggle. They were continually having to up his medication to keep his blood pressure stable and his heart rate had dropped a bit. It was becoming obvious Isaac was starting to get tired. He had fought so hard, from that very first moment when he was born to have survived for this length of time and he was now getting tired. It was almost as if, he knew that we now had the MRI results. It was as if he was saying, Mummy, Daddy, you know whats going to happen, I'm tired and cant continue this much longer. It was utterly heartbreaking. What had been Friday was now becoming Thursday and possibly even Wednesday - less than 24 hours away - how could we ever be in this position where we were running out of time with our son.
We stayed up all night with Isaac, reading, taking photos, family videos and just spending time with our amazing son. Early on Wednesday we were told that a decision would be made later in the day by the consultant whether he felt Isaac could keep going till Thursday or whether his life support system would be removed late on Wednesday. He would have the ultimate decision, and it would be based on wanting to make sure Isaac never suffered any pain.
Once again the team at St Thomas's did their utmost to help the family. The decision was taken that the morning would be a time for us all to be with Isaac, and for the family to hold him, spend time with him, and ultimately say goodbye to him. The afternoon would then be for Simone and I to spend time with Isaac. The staff had taken out another of the intensive care beds and cordoned off a large section of the room for us. the rules of two visitors were relaxed and as a family we spent time with Isaac. Each family member spent time with him, talked to him, held him, savoured every minute they had with our amazing little boy.
The afternoon was very special, in that Simone and I knew what was likely to happen, but didn't want to focus on that - we just wanted to focus on our amazing little boy and be together as a family. We read to him, he was always in one of our arms, I even fell asleep holding him at one point. It was all so very peaceful. I sang my favourite song to him, one I had played many times on my guitar but he had never heard. I have to admit, I was a blubbering mess, but I hope he could understand the words to James Taylor's "You've got a friend"
Wednesday afternoon was our time, and we just spent it together. At about 4pm the consultant came to see us. Isaac was deteriorating all the time, and he made the decision that it should happen today. He was concerned it may happen over night and out of their control and they did not want to do anything that could cause Isaac discomfort.
We were moved into a side room, just a room for Isaac, Simone and I, and the next couple of hours were just us, talking to him, telling him how he was our world, how special he was and how incredibly proud we were of him and of course how much we loved him. The consultant and nurse joined us and explained what would happen, and the possible reactions Isaac may have when they remove his life support system and then we prepared. We knew how tired he was, and then the system was removed. Isaac did not fight, he slipped away peacefully in Simone's arms with us each holding his hand and our world was gone forever.
Our beautiful little boy passed away at 6.56pm on Wednesday 1st August.
I'm sorry if this blog is very long, and rather upsetting - Ive blubbered most of the way through writing it, but I feel I had to tell Isaac's story properly, to show how incredible he was, but also to show the incredible care, attention, effort that the team at St Thomas's put in to keep him comfortable, to help him fight, to look after Simone and I and the rest of our family and for making what was an impossible and incredibly difficult situation as easy as it could possibly be (which really isn't easy at all). Since Isaac has passed away a lot has happened, but I think that needs to be kept for another blog, after all this one is all about Isaac's amazing short life.
If you've been touched by this story, and have any spare change at all - please visit the charity page. I have to run the London Marathon in Isaac's memory, to spread his story, to be the proud father that I am, and because both Simone and I miss him so incredibly much. At the moment it feels like our lives are over, but raising money to support the place that was Isaac's home, and to possibly help prevent other parents going through what we have gone through, gives us a focus, and to do some good in Isaac's memory. http://www.virginmoneygiving.com/darrenschallenges
Thanks xxx
