Here is why I am doing it.
Olly was born on 19th September 2011. He was our first child.
The mixture of emotions that I felt the day he was born was utterly overwhelming. The joy at having become a father and having brought life into the world. The surprise at our baby being a boy (we had chosen not to find out until the birth). The relief that the birth had gone well.
But also the worry that he seemed to be struggling to breathe a little bit on occasion. The confusion about why he seemed unable to make any noise when he tried to cry. The fear that, despite the reassurances from the doctors and nurses that he was probably fine and it was likely just to be a bit of mucus build-up, that in fact something was wrong. Perhaps very wrong.
At first I tried to dismiss my fears. He seemed OK when he was resting. They checked him over a few times and kept coming to the conclusion that he would be fine and we just needed to let him recover from the trauma of the birth. I even sent a “Mother and baby doing well” text to friends and family, trying to believe, hoping that they were right and I was worrying about nothing.
They were wrong.
Around 7 hours after he was born he had a serious respiratory collapse. By this time we were on the maternity ward but we were lucky to have a very switched-on trainee midwife who spotted there was a real problem and our son was whisked away from us into the special care baby unit.
And so it began. The days and weeks and months of tests. Paediatric consultants, respiratory consultants, cardiologists, nephrologists, gastro-enterologists, registrars, senior house officers, paediatric intensive care units.
Our lives were a blur as we followed our beautiful baby boy from hospital to hospital. The more they looked, the more they started to find all sorts of problems none of which had been picked up in any of the pre-natal scans.
We started to become familiar with all sorts of terms that most new parents never need to know. Supraglottic stenosis, Subglottic stenosis, submucosal cleft, bifid uvula, cryptorchidism, patent ductus arteriosus, pelvic kidney, reflux, tracheomalacia, bronchomalacia, laryngomalacia, nasogastric tube, echoing, intubation, extubation, BiPAP ventilation, CPAP ventilation, oscillation. The new terms came daily. Sometimes hourly.
The decision at 6 weeks of age to consent for him to have a tracheostomy in the end was not a difficult one. He had had to be kept on his front the whole time (“nursing prone” another term we got very used to) which was not sustainable in the long term. He had already suffered numerous respiratory attacks and the doctors were concerned that without a reliable patent airway he was at greater risk. I asked the question “What if this doesn’t fix the breathing problem?” I was told that given what they knew it was very likely to fix it.
At first we thought they were right. He was on room air and off oxygen support within a few days. For the first time since the day he was born we could sit him up and play with him in his bed. He could suddenly see the wonder of the world. He was particularly taken with a pink butterfly on his mobile with which he was totally mesmerised. We knew there were still lots of problems but it felt like a major milestone had been achieved.
Then they found the malrotation of the intestine. This is a potentially life threatening condition so they booked him in for an operation in another hospital. We were incredibly relieved when the highly skilled surgeon declared the operation a success.
Shortly afterwards we had some more good news. Olly’s swallow appeared to be safe after a test they had given him. But on review they noticed that this was actually not the case. He would need to be tube fed and there was no indication of when or even whether this would improve. Another huge blow.
By this stage too he was back on oxygen support. He had contracted bronchiolitis which even for children with no other problems can be very serious. In Olly’s case it left him struggling to breathe again even with the tracheostomy. Even when he recovered from the infection he still needed the oxygen.
But the doctors felt confident enough to allow us to transfer back to our local hospital with him a week and a half before Christmas when he was 3 months old. No longer being in a “tertiary centre” was worry for us but we knew if we were ever to get Olly home this was a necessary step. There were times when we knew that the people with the most knowledge on the ward about tracheostomies, their care and support were me and/or my wife. But the staff were wonderful in the main and did their best to help us in any way they could.
Christmas day itself was made as festive for us as possible. The DJ from the hospital radio station asked us if we wanted any dedications and we chose some songs for Olly and sang along with them for him when they came on. The nurses came in with several presents for our baby which we were grateful for but I was also somewhat confused. I wondered out loud if the nurses had gone out and bought the presents and someone told me that they had been donated to the hospital by charities. Despite everything we had been through in the previous 3 months I still didn’t think of Olly as a sick child in hospital. Of course people were going to donate presents to babies in Olly’s condition! I think it is a measure of just how quickly my perception of what was “normal” had changed.
In the January we started to prepare to take Olly home for the first time when he had another serious collapse which was diagnosed as pneumonia. After a scary few hours where they had to stabilise him he was rushed to another main hospital in London where he was put on the highest level of ventilation known as an oscillator.
For 3 weeks we lived in hospital provided accommodation again whilst spending most of each day in the ward with Olly as he recovered. Whilst we were there they ordered a specialist bespoke tracheostomy tube for him. They were very pleased with his progress and by early February we were back in our local hospital again.
Eventually we did get Olly home a couple of weeks later. It only lasted 22 hours however until he had another collapse and we had to call an ambulance. Luckily our community liaison nurse was with us at the time and took charge. It was an indication of just how fragile our situation was.
After another week we finally got Olly back home for a more prolonged period. He was 5 months old at this point. We were able at last to try and enjoy spending time in our home environment with our baby. Of course there was lots of equipment. Oxygen cylinders, feeding tubes, PH tester strips (to check the tube was in the right place each time before feeding), oxygen saturation monitors, nebuliser, tubing, wires, cables, suction machines, catheters etc. etc. Not to mention all the normal baby paraphernalia such as nappies, nappy bags, baby wipes, lotions, formula, clothes and the rest. But we had made it. At various points I had doubted whether the day would ever come.
We had had to be trained in resuscitation techniques and it was scary to know that at any time he could have another attack. We had nurses helping us out overnight every night which gave us a chance to (try to) get a good night’s sleep. The beeping of the monitors and the whirr of the tracheostomy suction machine from one floor down became normal and almost comforting knowing that a highly trained nurse was taking care of our boy.
And he was such a happy little baby. Despite everything he smiled a lot. And I mean a lot. I would say half of the photos we have of him when he was conscious show him with a cheeky grin on his face. He seemed to love life and I am sure he never knew that he was ill.
I lost count of the number of times I sat with him on the sofa watching Octonauts, Chuggington and Olly’s (my wife claimed secretly my) favourite, The Lingo Show. He was always fascinated with the colours and noises from the television. He loved the snooker, tennis and even the way the counter ticked down on Pointless. We also played with him on his play mat frequently and latterly sat him in his ball pool. He was particularly impressed with my juggling skills. Well perhaps bemused is a better word!
We started learning Makaton (baby sign language) as we could not be sure if he was ever going to be able to learn to speak and we wanted to give him as many potential communication channels as possible. We became more and more attuned to when he was doing OK and when he was struggling. In the end I could sense immediately when his tracheostomy tube needed suctioning and just by looking at his facial expression I could tell when an incipient nappy change was going to be in order.
The normal baby stuff became so mixed up with the extraordinary care we were providing that they all merged into one.
I would put him to bed at night in advance of the nurse arriving and the routine would consist of changing his clothes and his nappy, switching the oxygen monitor to his other foot, testing the PH of his tube, setting up and starting the feeding machine. Drawing up all the different medications that he needed in the correct doses and administering them down the tube. And of course singing to him, reading him stories like Room on the Broom, Winnie The Pooh, The Mr Men and his and my favourite The Gruffalo, complete with all the different voices.
Olly was never happier than when me or my wife were being silly with him making funny noises, singing, jumping around and especially playing peek-a-boo. He loved that game and showed a good deal of intelligence in predicting, often correctly, where we would be popping up from next.
I would watch closely for signs of how his intelligence was developing as there was always in the pit of my stomach that lurching feeling that they hadn’t yet got to the bottom of all his problems and perhaps there was something wrong with his brain. A doctor thought he had spotted “ventricular dilation” in his brain after the bowel operation but further checks suggested this was incorrect and his brain structure was OK. But we always worried and so the signs that he was a very bright and curious boy exploring with his hands and mouth as well as starting to learn how to bang things together and examine objects close up was a joy to behold and gave us hope that perhaps his development would progress well.
From the age of 5 months to 9 months Olly spent a fair bit of time at home with us. But there were more incidents that led to further periods of hospitalisation. On one occasion we took him to a new tertiary centre where his long term cares had been transferred to for a quick examination and he ended up staying in for a month as they performed more and more extensive tests and tried different treatments for his various conditions. The sort of thing had become completely normal for us.
Every time he had a collapse we would call an ambulance, rush him to hospital and sometimes he would spontaneously recover. Sometimes he would need ventilation and there was another occasion when he required time on an oscillator again. But each time he would end up back home with us.
The doctors could not find a label to put on his condition. Various things like cystic fibrosis had been tested for and dismissed. There is a syndrome known as Opitz-G which for a while I thought he had but when we finally saw a geneticist with Olly she did not think it was likely to be that (and tests have subsequently proven she was correct). In the end they were simply treating all the different symptoms of his illness. The hope and expectation of some of the best doctors in the country was that as he got bigger the floppiness in his airways would firm up, the narrowness would be less of an issue, his swallow would hopefully become safer and generally he would have a good chance at a relatively normal life. He would probably need some operations to bring his testicles down (although one dropped naturally when he was about 7 months old – a wonderful day), to correct his cleft palate and to allow him to feed through his stomach rather than down his nose. But the prognosis was felt to generally be quite good.
However they could not explain why he kept having respiratory collapses. There were various theories, mucus plugging, sudden collapse of airway, perhaps something a bit further down in his lungs which was hard to see as they were floppy and the bronchioles had a strange arrangement. There was never a definitive answer as to why it kept happening. The tracheostomy was supposed to have bypassed the main problem with a hole in his neck that he breathed through but this clearly had not solved it.
On the morning of 10th July 2012 at 9:30am Olly had another collapse. As usual there was not much warning. He seemed fine one minute; I had been bouncing him on my knee, he had been laughing and then suddenly his oxygen levels dropped. We always knew what his levels were because of the monitor. We did what we always did in these situations which was to turn his oxygen up to maximum, manually “bag” him and watch him very closely. He seemed to recover quite quickly and we started to ween the oxygen back down over the next few minutes. But we could not get him below 5 litres per minute which was about 10 times as much as he normally needed. This indicated a serious problem and we called the ambulance.
At first I had thought this was going to be another one of these collapses that he recovered from as usual. We had been in this situation numerous times and he always had previously. We spent most of the day in our local hospital with him but over the course of those hours his oxygen requirements kept going up. By late afternoon we were up to the maximum 15 litres per minute and even this wasn’t enough. The paediatric intensive care unit at his tertiary hospital had been contacted and they were on their way. He was taken into the recovery area with a number of senior consultants including anaesthetists who manually ventilated him using the “bagging” technique. They tried to stabilise him until the paediatric consultant and specialist nurse arrived in the ambulance from the PICU.
What then followed were the worst five hours of my life.
Dozens of doctors and nurses tried desperately to keep my baby boy alive. He required constant bagging on full oxygen the entire time. They had to give him heart massage so many times that I lost count but it was certainly in the dozens. His blood pressure kept dropping and they had to give him numerous doses of adrenaline and noradrenaline to correct this.
Eventually the main consultant turned to me and said two sentences that I will never forget for the rest of my life.
“You do know we’re not winning here don’t you?” he said.
I asked him what he meant. He responded:
“Well he’s dying and I don’t know why.”
The sight of my darling baby boy who only a few hours earlier was so full of life and so happy, lying unconscious on a hospital bed soaked in his own blood looking so pale was too much to bear. I kept having to walk away to compose myself.
In the end they got him stable enough to transfer him by ambulance to the main hospital where the PICU was located. All the other times Olly had been transferred by ambulance I had followed in the car while my wife went in the ambulance but this time I insisted I was to go with them. I knew there was a chance he wouldn’t make the journey and I needed to be with him and my wife.
We did make it to the PICU together. They put him on the oscillator which had worked wonders for him on two most serious previous occasions but this time it did not work. His oxygen saturation levels came up on the monitor and they were below 40. I just knew instinctively that he had been saturating at that low level for a long time. In the other hospital they had turned the monitors away from us and in the ambulance they hadn’t monitored it at all. I knew that had been a bad sign and now I knew the truth. At those sort of levels for a prolonged period brain damage is certain. The only question is how extensive. I knew that already.
The doctor asked me and my wife into a side room and told us in plain and honest terms that Olly was unlikely to survive this and if his levels kept dropping as they had been doing the thing that would be in his best interests was to not intervene. He had been an incredibly brave boy who had fought his condition for more than 9 and a half months but his body was telling us he had had enough. He used the word “progressive” to describe his Olly’s condition. He still could not put a name to it but it was clear from reviewing the notes and the way he had and hadn’t responded to the treatment this time that his condition was actually getting worse, not better as they had previously thought.
We thanked the doctor for his honesty and went back through to sit by the beside of our beautiful boy. My wife asked for the hospital chaplain to come and christen him which he did. I found it very hard when during the ceremony the chaplain referred to how the christening is for the rest of his life. I knew the rest of Olly’s life was only going to be another few hours. My wife read him a chapter from Winnie the Pooh, the same book we had read to him on the many occasions he had been on life support machines previously.
In the end it was incredibly peaceful and in some ways beautiful. My wife requested for us to hold Olly in our arms. She sat and cradled him whilst I sat next to them and put my arms around him too. The nurse continued to bag him until we said we were ready and then she stopped. We kissed our baby and told him how much we were going to miss him but that it was time for him to let go. Over the course of the next few minutes he passed away. He lived until 5:00am on July 11th 2012.
The aftermath was a blur.
We had to organise the funeral. We wouldn’t have been being true to Olly’s memory if we had not included so many of the happy memories we had had with our boy in the eulogy. My wife’s uncle read out our words and afterwards people told me that they had been amazed to be laughing at the funeral of a baby but we felt that was appropriate. I also did a reading of The Gruffalo and yes, I included the voices exactly as I did when he was alive. Olly was always at his happiest when we were happy and laughing and we had wanted to reflect that. There was of course lots of sadness too during the service but we also wanted to say thank you to everyone who had provided unfailing help and support to us in particular the NHS.
Afterwards we went away for a couple of days but of course we had to come back and start rebuilding our lives. Having all the equipment taken away was hard. We put all of Olly’s toys and other stuff in his room but we would always have the door open.
I still find it very difficult to look at photographs and film footage of him. I had hoped that would get easier with time but it has been several years since he passed away and I still struggle with this.
I am very glad to have known my baby boy and to have been a father to him. I would not change that. I’m just so sad that I will not see him grow up into a toddler, a boy and eventually a man. I am certain he would have had a great personality. In his short life he showed us what potential he had and it is so tragic it will never be realised.
And so nearly five years since our first beautiful baby boy died our circumstances have changed. We have another son, Noah who was born in April 2014 and happily he seems to be perfectly healthy. We also moved to a completely different part of the country to be in a more rural area. We had planned to do this shortly after Olly had been born but that had proved impossible.
On 23rd April this year I am going to run the London Marathon. I am running it on behalf of COSMIC, a charity linked to the paediatric intensive care unit at St Mary’s Hospital in Paddington. It was where Olly spent those three weeks in early January 2012 after his suspected pneumonia. We know how important these charities are in providing facilities for the children and their families. Until 4 months ago I had never done any running in my entire life and when I tried to run 200 yards I had to stop with my lungs burning. But I have been training hard and last week I ran 16 miles. It has been hard work but compared to what Olly had to go through it is nothing and it is a privilege to raise money for them. Please follow the link and give what you can.
I dedicate this post to my beautiful baby boy Oliver Seamus Eric Thompson.
I will never, ever forget the joy you brought into our lives although it was so unbearably brief.
Sleep well baby boy.