Our story

My story

Tomorrow is my youngest sons second birthday, he’s not with us. I bought him a present, just a small push along toy; I put it in the Christmas gift appeal box at the leisure centre. My husband has taken the afternoon off work tomorrow so we can go out for Finn’s birthday lunch; we’ll not be lighting candles. 11 weeks from now will be the second anniversary of Finn’s death. Writing that has made me cry again but I’m happy, I know it sounds crazy but I really am. I can’t begin to put into words, and even if I could I wouldn’t want to, the pain I feel every day and every night over losing Finn. There’s a deep unnatural sadness in me that will never go away, some days it’s sharper than others but it’s always there. The most important thing is that I’ve realised that happy and sad aren’t opposites, they can co-exist, and they do. I’m writing in a rare free moment when Finn’s amazing, kind and intelligent older brother Rory (3 going on 40) is at nursey, and my beautiful smiley 5-month-old daughter Easkey sleeps peacefully upstairs. It would do them a huge disservice, and would be thoroughly dishonest, to say that I’m not 100% beamingly happy when I catch either one of them doing…anything really, those strange little creatures are my world. I’m also blessed to have a very good-looking husband, there’s obviously more to Paul than that but it’s definitely a stand out feature and I love him more than I ever really get around to telling him. 

I haven’t figured out why I’m writing this yet other than I know there’s too much in my head and despite everything, my life is good, and I can’t afford to go crazy. Unfortunately, what goes through my head isn’t just the normal grief and longing you’d expect, it’s also intense frustration. We don’t know why Finn died. We know why he was in hospital, we know he had cystic fibrosis, and we know all the measures that had been put in place specifically to ensure that what happened to him couldn’t happen. But it did. My son was only 9 weeks old, had been born almost 6 weeks early, was recovering from a major operation, was being trialled off respiratory medication and was left, unmonitored and unattended in a room entirely by himself. We don’t know how long he was alone before a nurse found him unresponsive. We don’t know because no-one wrote any nursing notes until 4 days after Finn’s arrest. We don’t know because the timeline the nurses report from that night leaves a 20-minute gap between him being found and the alarm being raised. We don’t know because 3 nurses independently gave 3 different stories, none of which are backed up by medical notes and all of which directly conflict with statements from his consultants. We don’t know because during the 6-month investigation these facts were described but no one cared enough to go back and try to align the information and get to the truth; glaring mistakes and contradictions were signed off by the highest board members within the NHS trust without a second thought. When I should be remembering my son as the beautiful baby he was, the amazing person he would have become, I’m trawling through medical notes, reading through statements and googling terminology from his post mortem. No mother should have to take responsibility for understanding her own son's post mortem.

Maybe I’m writing this to ensure that Finn remains my son, that when I’m finally able to move beyond the final days of his life, the memories I want to keep haven’t been lost or stolen by those who just want to sign the papers and file him away. Because my son is more than just paperwork and I’m scared of forgetting that.

Finn’s story:

Finn was born with meconium ileus, essentially his bowel became blocked before he was born and then burst. He was born at 34 weeks, we’d had a slight worry over a scan a few days previously, but I’d been assured it was most likely nothing and I’d just be rescanned the following week to check. I’m a pretty level-headed person usually, yes, I google everything before I go to the doctors or even take my car to the garage but I am/was a scientist so I understand odds and probability and I’m not easily panicked. I panicked over that scan though. A few things had popped up in my extensive googling, cystic fibrosis being one. Both me and my husband come from large families with no history of cystic fibrosis, a life-shortening genetic disorder, and we already had a healthy son, so I worked out the probability and it was very, very, very low. I couldn’t shake my bad feeling. 

Finn had cystic fibrosis, it wouldn’t be confirmed until he was 2 weeks old but in the end I wasn’t shocked, devasted, but not shocked to be told it on our first visit to the ‘comfy seats’.

When Finn was born, I held him for what was at that point the best 30 seconds of my life. My world was perfect. Then the nurse took him out of my arms and he was gone. He was only 34 weeks at that point so even having him taken away didn’t really ring alarm bells. I got happily stitched up in a strange post birth daze and got my lovely husband to agree on the name Finn when he really wasn’t in a position to argue. We were then told Finn was in the neonatal unit, he was stable but there was a problem with his bowel that would need immediate attention. That was the first time the endorphins stopped fuzzing my brain and my stomach lurched. A surgeon from the nearby children’s hospital was on the ward and was going to look at Finn and we’d be able to see him as soon as I was ready. I had the quickest bath ever, I think you can safely call it a dunk, threw my clothes on and got wheeled up to see him. He was tiny, he was covered in tubes and a nurse was just disposing of a syringe full of gunk they’d brought up from his stomach. Finn's lead surgeon was there, it was the first time we met, he was abrupt in telling us he would need surgery straight away, probably that afternoon, I felt faint and sat down; I didn’t like the surgeon. I feel guilty saying that now, had it been George Clooney I still wouldn't have liked him given the news he was delivering. For the record, that surgeon  has become someone I like and respect enormously; I will never have the words to thank him for what he did for Finn and the honest and open way he talked with us.

The nurses got me discharge papers sorted as quickly as possible, so I could go with Paul and Finn to the children’s hospital where he would have his operation. In the end the operation was put off until the following morning so I went home to hug Rory who was only a year and half old and who at that point I was missing like crazy. He was happy playing with his nana and didn’t need me nearly as much as I needed him that evening. I had dinner, gave him a bath and put him to bed. Throughout everything that followed I always came home to put Rory to bed. In so many ways he was and is my saviour and that routine became so important to me. Once Rory was happily sleeping Paul took me back to the hospital where I spent the night by Finn’s side. 

I’d be here forever if I tried to describe every detail I remember about the next 11 weeks so I’m going to do some jumping about and hopefully give you the gist of what went on. Finn had his operation, it was a success. Finn's surgery team did a brilliant job piecing back together his bowel. To allow the bottom section time to heal Finn was given a stoma (a bag to poop in!). Basically, the bowel was rerouted to the surface of his stomach so nothing went down the lower part. A later operation would see his bowel reconnected and the stoma removed. I wasn’t able to breast feed him while his bowel was in recovery so he was reliant on TPN, intravenous nutrition, to survive. Because he needed TPN until his stoma reversal operation he couldn’t come home. No one could tell us straight away how long that would be, but we knew it was a balancing act between allowing him time to recover and gain strength for a safer operation pitted against leaving him too long on TPN, which itself could cause problems over the long term. 

I’d jumped from the horror that Finn would be in hospital for a few nights, to the realisation when ‘operation’ was mentioned that it could be more than a week, suddenly it was hitting me the doctors were talking a lot longer. That was the first time we had the conversation with doctors that went something like ‘how long are we talking?’, ‘we really couldn’t say’, ‘can you give us a ballpark?’, ‘we really couldn’t say’, ‘can you please just tell us if we’re talking days, weeks or months?’.We really had no sense of what was a long or short time in a children’s hospital. On that occasion we were told months, on another very memorable occasion that I will never be able to stop running through my head we were told days.
  

Finn returned to the neonatal unit in the main hospital after his operation. For the first week I stayed in the hospital each night, just going home to have dinner and put Rory to bed. I can’t explain how much I missed Rory during that time.

Paul finally convinced me to sleep at home and another week went by. We learnt Finn had cystic fibrosis, I don’t remember crying in the ‘comfy seat’ room, I’m sure I probably did but it doesn’t stick with me like that. What I remember is a very practical discussion with Paul, we had known the test was coming so we’d researched cystic fibrosis endlessly by then, I remember us agreeing we’d be fine and we’d be the best damn cystic fibrosis parents there ever was. We are both outdoorsy active people and actually one of the most important things someone with cystic fibrosis can do for themselves is to be active and outdoorsy. We gallantly decided that if we had to have a life-shortening genetic disease in our family then cystic firbosis was the one for us! I then remember walking in my front door, telling my dad and bursting into tears as he grabbed me close.

We put the cystic fibrosis strictly out of our heads, in fact I think the cystic fibrosis specialists that came to visit us to answer our questions were a bit concerned we didn’t have many. We decided that cystic fibrosis was a long-term problem, our short-term problem was that our newborn was recovering from an operation and, once I was happy I was up to date on the basic cystic fibrosis science, that’s what we focussed on. 

We celebrated when the surgeon told us Finn could start having some breast milk. Only 1 ml every 2 hours but it was the first bit of good news we’d had and I could have hugged him right there if he hadn’t looked like one of those tap-you-on-the-back huggers. Paul and our families celebrated because it meant Finn was recovering well but for me it was more selfish. Finally I had something to do, something that no doctor or nurse could do, I could express milk for my son, I was his mum and they weren’t and finally I had become just that little bit more important.

We celebrated every tiny milestone because for us they were huge.

After 2 weeks Finn was transferred to the children’s hospital where he’d receive much more specialist care for his cystic fibrosis as well as being closer to the surgeons who were still discussing his recovery and his next operation. We got used to it. It was our new normal. We were vaguely aware of time passing and of the world carrying on outside the hospital. Christmas came and went so it was hard to ignore. 

Finn was doing great. He had recovered well from his first operation, was gaining weight and he’d found his voice. He was turning into a proper little boy with personality. I spent most of my time in the hospital with him in my arms and the nurses would tease me that I’d have trouble when I went home. I liked it when they mentioned the ‘H word’ but I couldn’t bring myself to think of home yet, it was always too far off in the distance, I could still only deal with one day at a time. We were tethered to the TPN machine but I’d become comfortable with his wires and tubes so I could manoeuvre round his bed and let him gaze out the window.

I’d sing, I sang all sorts to him but the one we always came back to was ‘Christopher Robin’. He was a very chilled out baby, he had no choice but to take things in his stride and even with the constant onslaught of needles he rarely cried. What he did not like, and by did not like I mean screamed so loud nurses would coming running in, was having a bath. I love water, I’m partially aquatic, Rory loves water and now Easkey loves water, they were very much naturals as babies when it came to baths and swimming pools. Finn did not like water! It wasn’t a temperature problem or anything like that, it was attitude, an angry scream rather than a distressed cry and the instant his last button went in and I lifted him up he was silent and back to his usual calm wide eyed self. 

I know it can be difficult to develop that parent child bond in a hospital situation, but we didn’t have that problem. I loved him with every inch of my sole. Leaving him every night felt like a physical pain. I coped during the day when we were together, but I struggled so much when I was at home. I would panic and itch to get back to the hospital because by his side was the only place I felt calm. 

Finn had his second operation in early January 2017. Once he was back on the ward we watched and we waited. I arrived into his ward one morning to have a nurse come running in and hug me telling me Finn had done a poo! That was champagne worthy, Finn’s gut was working, not perfectly, the poo wasn’t quite yellow enough but it was working! We took the standard parent poo chat to a whole new level. We started having daily talks with his gastro team as we slowly upped the volume of milk he was taking whilst simultaneously lowering his TPN. Once the TPN was off he was ours, he was coming home. 

We saw his cystic fibrosis team regularly but I’d not fully engaged with them, there was too much else going on and I couldn’t let myself think about the ‘when he’s home’ stage so cystic fibrosis had lived in the background. On January 21^st we were only a week or two away from getting him home and when I saw the cystic fibrosis team I braved it and I asked them about the long-term. I had read everything there was to read but it was the more practical questions that I needed to ask. ‘What happens if a healthy person takes Finn’s medication?’, i.e. what if Finn turns out to be a little scamp and hides his enzymes in Rory’s dinner. Anyone who knows my big brother would understand that was a very valid concern, especially as it was him I often saw when I looked at Finn. The answer for anyone who wants to know is a sore tummy and a bit of extra time on the toilet but no long-term damage. We talked for quite a while and I actually allowed myself to imagine Finn sitting up on the worktop, stealing grated cheese from the chopping board and watching me cook. Paul and Rory came in after lunch and for the first time I put Finn on Rory’s knee and took a couple of photos of the two of them together. They are terrible photos, too many wires to get them looking comfy and odd hospital lighting, but the most precious photos I have. Rory and I went for a walk and talked about Finn coming to sleep in our house. He said he’d quite like that. 

We went to bed at 10:00 that night on a high, my phone rang at 11:45, by 12:05 I was in the intensive care ward of the sick kids hospital being told Finn had stopped breathing, they didn’t know how long he was alone before he’d been found, if he made it through the night he might have severe brain damage. Finn didn’t recover. Two weeks later Paul and I sat with him in our arms as the doctors removed his life support and we watched our son take his last breath. We walked out of the hospital that night, empty handed, knowing we wouldn’t be returning the next day. I’ve not been back since and pray I never have to again. 

That’s not the end of Finn’s story, far from it. Overnight people who had never known Finn or seen him as the beautiful little boy he was, took over. He went from being our son to their paperwork. We went from being involved parents who’d won the respect of the specialists and nurses and who’d been fully involved in all Finn’s treatments, to grieving parents who were, from then on, to be treated as fools. Our interaction with the NHS falls easily into three distinct periods. For the first 9 weeks I cannot praise highly enough the consultants and nurses we encountered. When Finn went into NICU (the intensive care unit) it was clear very quickly that things had changed, we were on the outside. Everything felt filtered and we were treated like we too fragile to get the full story; Finn needed us and we'd never been stronger. After Finn’s death is the ugly part, our son became paperwork cluttering up people's desks. The consultants we'd grown to know and respect were no longer involved and we were treated like idiots, like idiots who had to be sheltered and who couldn't possibly understand the details. There was no acknowledgement that we had been living this for 11 weeks, we may not have medical degrees but we knew an awful lot more than we were/are given credit for.

After Finn's death, we were told there would be a full external investigation which we were relieved to hear. We still had no idea what had happened to cause Finn’s arrest on the 21^st. It’s not an easy thing to accept but we’d talked extensively with the consultants who’d been with Finn before the arrest and we trusted them, and still do. They couldn’t explain it and we had every faith they’d do everything they could to find us answers; we accepted that we may never know the truth. What we couldn’t accept and what we still can’t accept is that no-one can tell us what happened that night on the ward. Finn had had an oxygen monitor attached to his foot the whole time he’d been in the hospital. There was no escaping it, when he wriggled or when I lifted him it often screamed at us until either a nurse came in or I managed to fix the connection, something I was pretty good at doing by the end. When Finn stopped breathing that monitor should have screamed and screamed until someone came running in (in fact it had on a previous occassion, most probably saving his life).

Because of his cystic fibrosis, Finn was in a room by himself rather than on the main ward so the monitor was more important than ever. He’d had a previous respiratory attack and had been on a common respiratory cystic fibrosis medication ever since. In preparation for coming home, he was being trialled off the medication so again the monitor was the one thing that gave us piece of mind to sleep at home at night. For the two weeks Finn was in NICU we avoided mentioning it to the doctors, we knew something had gone horribly wrong, at first we assumed the frank discussion was coming. ‘The nurse had forgotten to reattach it after changing him and was suffering greatly with guilt’, ‘there had been another incident on the ward so no-one heard Finn’s alarm’, anything that came with an excuse and sincere apology. When it didn’t, we carried on knowing it would come eventually, the important thing at that time was his recovery. After Finn’s death we assumed it would be addressed in the investigation. It wasn’t. The one thing that should have saved Finn’s life, the mistake that led to his death, two years later we are still fighting to find out what happened. We still don’t even know simple facts such as what time Finn was left and what time he was found. Both of these are simple questions that should have been easily answered instantly, after all a nurse writes up notes every night. Except on that night Finn’s nurse didn’t write up any notes, neither did she write them up the next day when she was back working on the ward, she didn’t even write them up the day after. It took 4 days and a nurse from the NICU to get her, sit her down, and make her write her notes there and then in the NICU. The notes she wrote didn’t make sense, her timeline had 20 minutes between the time she apparently found Finn unresponsive and when the arrest call was logged. We waited 6 months after Finn’s death to see a report that had been signed off by all the highest members of the board that stated this timeline clearly on the first page. Not one of the investigation team, or the subsequent signatories had seen this as alarming. Additionally, three nurses independently gave 3 different stories regarding the use of Finn’s monitor, none of which are backed up by medical notes, all of which go against our own experience, and all of which directly conflict with statements from his consultants. We’re being told it wasn’t needed and wasn’t being used anymore despite us leaving him that evening with it attached and despite us witnessing its use every day. These are only some of many red flags that appeared in that report. Since then we’ve written, questioned and met with anyone that would listen and repeatedly been subjected to condescension and complacency. The very same thing could happen to another child and another family yet no-one is interested in understanding or learning from Finn’s death. 

The systems put in place to ensure lessons are learned is failing. Everyone followed due process in Finn’s case, every box on the form was completed and every dotted line signed, but it was wrong. It was done badly. Finn’s consultants have spoken to us and told us of changes they themselves are initiating to prevent a repeat case, but the official paperwork states ‘no learning outcomes’ so nothing will be shared beyond that hospital. When we questioned the report, no-one showed interest in correcting it or carrying out any further investigation to resolve it. How much time and money has been wasted filing that paperwork when it means nothing? When I looked into it further, the disregard for accuracy was much more widespread than I’d imagined. For example, there is a record of Finn’s oxygen levels being 100% on his ward chart at midnight on the night of his arrest. At midnight Finn was no longer on that ward, he was fighting for his life in NICU. That was surely seen by the investigation team and yet either they paid so little attention they didn’t notice or they simple did not care that Finn’s records had been clearly filled in in advance, rendering them completely useless and showing a clear violation of nursing procedure. 

I’ve been left with knowledge of short cuts and procedural failures in the daily care of my son, complacency right to the highest levels of the Trust and a system that is set-up to prevent external input. When I should have been allowed the space to grieve my dead son I’ve been left to trawl through every email, datex record and medical note I can find because no-one else had the will to do so. I’ve had to prove myself time and again to be talked to with respect to my own intelligence and I’ve had to fight to have the consultants that knew Finn involved in discussions. And after everything I’ve learned there’s no-one that wants to listen.

I don’t want to forget the amazing things the NHS did for my son and I never want to loss the respect for the individuals involved in his care. However, to every faceless signatory on Finn’s investigation panel I want to scream that he’s a child, a dead child, my dead child, he is so much more than paperwork cluttering up your desk. And to the nurses on Finn’s ward that each give a different account of what happened that night I want to remind them of the long days we spent chatting and laughing, the personal relationships we built, the care they gave to Finn on a daily basis and beg them to have enough respect to us as a family to apologise if mistakes were made and tell me what happened, truthfully and without censorship.