My third child is coming...

I am about to have my third child. Yes, my third. I’ve lost count of the number of people offering me advice about what it’s like when you have your second.

People shouldn’t use the phrase “When you have your second" with me. What they should say is, "Once you’ve got two in the house" or something like that. This would be much more sensitive, and indeed accurate. I’ve never had a newborn baby and an older child to look after all at the same time, the usual position of those having their second, but for me, my third child.

I want their advice about how to deal with two at once. I’m scared about how it is going to work, as most parents I’m sure must be when facing this prospect for the first time.

“How are you feeling about coping with a newborn with a 3 year old to look after aswell?” That would be a good question to ask me.

“My top tips on coping with a new baby and an older child are…" would be great advice.

Basically, any question, statement, or advice that doesn’t refer to this baby as my second, or refer to ‘when you have your second’ is absolutely fine with me and indeed welcomed.

I can't help it, he’s my third. It's important to me that people remember x

5 years and 5 months....

The 15th July 2016. 5 years and 5 months on from the 15th February 2011, the day she died.
What happened on that day?
I woke up in the bed next to her in PICU. I had made the decision about a week earlier, after she had reacted badly again to the steroids she was being given, not to leave her side unless my husband was with her, and then only for the shortest time period. So I slept on her bed with her every night, and the doctors and nurses in PICU were happy for me to do so.
I realise this would not be possible with every little patient, but I really should write to them after all these years and explain how important it was for me to be able to do that. Whenever Jasmine was poorly she didn't want to go in her cot, she wanted to be in Mummy's bed in Mummy's arms, and then she could sleep. It helped me sleep too, I knew I would wake if she was in distress. Being able to sleep next to her in PICU gave me (and her I am sure) comfort.



So I woke up, and waited for Jeff to arrive from our accommodation close by. Then off I went for  a quick shower and teeth clean before coming back.
The rest of the day passed by as it usually did, with doctors and nurses coming to the bedside, taking measurements, using machines to measure 'activities' sweetly smiling at me but not telling me a damn thing about what those tests were telling them. "We pass the information onto the relevant consultant, we are just the technician / junior / whatever they were... " The point was they might be 'just the tech', but I was this childs' Mother, and they knew more than me, which hurt like hell.
The secrecy that went on on that ward is still, often, the material of my nightmares. Often we would get the 'opportunity to ask questions' when Jeff and I were marched off to a 'private room' with a whole load of clinicians to 'discuss progress'.
Nobody seemed to appreciate the high level of stress that caused me, having to be so far away from my child for however long it took to answer the questions, or the pressure I felt to remember all the questions and fully take in the answers during my 'opportunity' to do so.
I so wanted to be able to spend my time, while Jasmine was 'sleeping' reading all the notes and knowing every minute detail of what was going on but this was not allowed. The pages and pages of information about MY child that was just sitting there on that desk was 'out of bounds'
So the day passed by, but I knew we were awaiting 'the' result. Jasmine had received massive doses of a drug called Thiopentone, when she first arrived on PICU, and it was taking forever to wash out of her body. Until that drug had cleared enough, we could not know if she was going to survive or if she was (I hate this phrase) brain-dead.
I remember sitting in the rocking chair near her bed, and seeing her doctor looking at a computer screen on the main desk. I could see Jasmines name and that the test result was on there. And I could see the result. About 2. I knew it needed to be less than about 4.
I didn't feel any of the things you, or indeed I , would expect a mother to feel in that moment. I didn't feel a single thing. My body and brain shut down in preparation for what was about to happen.
The nice doctor with the fabulous blonde curly hair came, knelt down next to Jeff and I, and said, I'm sorry, the value is 2. We already knew that because Jasmine was showing no signs of any response whatsoever, this meant the worst.
I simply said 'Thank-you'. In that moment I think I thought "Thank you" for telling me the minute you knew, rather than waiting for 'the opportunity' and "Thank You " for doing it here rather than dragging me away from my girl yet again.
There were spontaneous tears running down my face, but I wasn't actually crying if that makes sense. I wasn't making the noise or doing the movements. My body was reacting to the news, but me, my mind and soul, I couldn't let it in. I have never let it in.
We were then told that 'the tests' to confirm Jasmine was in fact brain dead would be undertaken, and would we like to watch? I was horrified by this question and certainly did not want to watch. In hindsight I do see that some families would want to be sure there really was no response from any test rather than just accepting this as correct from a doctor. But I already knew she was gone.
We were taken to 'the room' and joined as I had requested by the hospitals chaplain, who I had grown to like very very much and who had provided so much support.
We talked, my tears flowed, I asked if I had said the wrong prayers for my child? I had prayed she would not suffer, should I have asked God to not take her from me? Were they two different things? I was reassured I hadn't got my prayers wrong.
Jeff was quietly sobbing. What was there for him to say?
The doctors came in and confirmed the tests.
They asked us if we would like Jasmine to be moved to a side room, and we could have one last night with her before they withdrew support in the morning. It was about 6:30pm.
I didn't want that. I felt if her little soul needed to fly away, it was cruel to keep it trapped in a body that no longer worked rather than set her free, and it was undignified. I wanted to let her go now (even though I never wanted to let her go).
We had had discussions about her body being able to save other little children, but we were told due to uncertainty over her diagnosis this would not be a possibility. At the time I must admit I was relieved. I wouldn't have to choose between holding her in my arms and letting her go for as long as I wanted, and feeling rushed but giving another child life. (5 years on I feel slightly differently. Knowing Jasmines diagnosis should have been clear and failures in comms led to the uncertainty, I would like to be able to think parts of her have saved other children. A gift from her to another child). So we were taken to a side room, to let her go.
I explained I would like all of the lines, cannulas etc to be removed so there was nothing left, and for the ventilator to be removed only right at the very last moment once she was in my arms, so that every second of her passing was right on me.
There was a bit of discussion over wether this was 'possible' as this was not how 'we normally do it,' but then a nice sensible person said of course it was possible and they set about removing all of her wires.
Slowly my lovely little (perfect on the outside still) girl was revealed as all the tapes and wires disappeared.
I warned them that I was going to take off my top because I wanted her to be skin to skin with Mummy for this. If I'd have known this was happening that day I may have chosen a different bra I remember thinking.. bright yellow with hot pink polka dots was not 'occasion appropriate' but then Jasmine would have liked the colours.
The doctors picked her up off the bed and placed her in my arms. I was standing up. Nothing could have prepared me for the shock I got in that moment. She was like a rag doll. You cannot even imagine what this is like unless you have experienced it. It's not like a child in a deep sleep, it's rag doll.
I held her tight, her 'dead weight' another shock, and the ventilator was removed. Then as requested all the clinical staff rushed out the room and shut the door, and left Jeff and I there in the darkened room with her while she slipped away.
It was silent. She did not breathe. We sang to her, the same songs we always sang at bedtime, and we cried.
We kept putting our ears to her chest, her heart did beat for a long time, and then in a moment, it stopped.
She looked perfect. There was nothing gruesome or frightening. Just quiet.
We let a doctor know, who confirmed she was gone, and then we were left with her again.
I washed her, changed her into a fresh nappy, and dressed her into a lovely little white dress, frilly over nappy pants, and white socks. She looked like a sleeping angel.
Then I had to change into 'scrubs' because I had messed up my clothes. It felt a little odd being dressed like a doctor. I wondered if only I had really been a doctor, would any of this happened? I was angry at myself that I hadn't had the skills and knowledge to make her better myself.
Over the next few hours we held her in our arms, and each made 'the phone-calls' to the people we needed to.
The chaplains came to see us. When they saw her lying on the bed, all dressed in white, like a little angel, and invited Jeff and I to say our own prayers for her, they sobbed, loudly and uncontrollably, as I spoke. "Thank you God, thank you for giving me Jazzie, she has been the greatest joy of my life. Help me understand why I couldn't keep her, I need to know.. " Or something along those lines.
The chaplains later told me that they are always moved when a child dies, but rarely do they sob out loud quite so much as they were, she just looked like one of Gods angels.
My Mum and Dad arrived to take us home, and we all spent another couple of hours with Jasmine. I have never, and will never again, see my Dad cry like he did in those hours.
When it was time to go, I asked to be left alone with her.
I laid down beside her, for our last ever sleep next to one another. I was there for a long time before a nurse stirred me by coming in to see if I was ok. I asked her to capture an image of my final time with Jasmine.




Then I asked for scissors. She was naturally concerned as to what I needed these for. I explained, when Jasmine cuddled me she always played with my hair. I needed to put a big slice of my hair in her hand to comfort her, as I couldn't be with her now.
I cut my hair, placed it in her hand, kissed her again, and left the room.

I have never felt so sick in all my life.
The overwhelming physical pain and grief was pushing up from my stomach and from my heart towards my throat, but I wouldn't let it get passed.
I have still, to this day, never let it get passed.
I keep pushing it back down in whatever way possible.
I am afraid that if I let that pain wash over me, I will die. Right there and then. I know my mind and body simply could not survive that pain. And I have to live to fight for the truth for Jasmine, achieve better patient safety for other children in her memory, and to be the best wife and mother I can to my lovely Husband, my precious son Benji, and the new little boy that is growing in my womb.

Two and a half years later....

Blimey! Two and a half years since I wrote anything. And yet, still I feel no further forward. It's been 3 years since a brilliant leading paediatrician with 40 years experience took a look at Jasmines records and answered my questions, and told me that in their medical opinion there is NO WAY Jasmine would have died had her care been appropriate. The catalogue of errors they identified were, guess what, pretty much all the errors that I identified and went to the two hospitals with after she died, only to be fobbed off by various means. Since then, experts from other disciplines involved in Jasmines care, have all said the same thing to me too.

The legal system has been in huge thorn in my side for all of these three years. The NHSLA states that they are there to rapidly settle those cases that should be settled and to defend those that are defendable. We are told there is a Duty of Candour and that all trusts are open and honest. Yet I am advised by my legal representatives that we must not provide the NHSLA with all of these expert opinions and all of our witness statements for them to consider, without getting their agreement to share the witness statements of the involved clinicians and their independent expert reports at the same time. My legal guys used to work for 'the other side'. They tell me that the clinicians involved will not willingly admit to their mistakes, and that I am dealing with one of the most famous children hospitals in the world, they will want to protect their reputation at all costs rather than admit any liability here. They tell me they would expect the other side to 'slightly alter' witness statements in an effort to make their actions look more acceptable if we just gave them all the damning evidence without receiving their clinicians accounts of what they did and why first. What about the Duty of Candour I ask? Pah! They say. Hmmmmm

In my world of ideals and morality, I would sit down and meet with the leading clinicians involved in Jasmines care, having given them all of our expert evidence to think about. I would take the experts with me to explain to those clinicians how they have come to believe that Jasmine would not have died but for her poor care. I would expect healthy, grown up, open and honest discussions and perhaps debate, discussing the issues and together reaching a conclusion. I would want opinions to be evidence based. I would want this because what is most important to me is to fully understand how Jasmine died. I believe I know the mechanisms by which her brain stem was so severely injured she could not survive, and I believe I know what the errors were that led to this. But what I also want to understand, from the people involved themselves, is why those errors were made. Why, on that day, it went wrong, when any other day it would likely have gone right? What human factors were at play. Those human factors are the key to safety. Once we all discuss, agree, conclude those things, Jasmines story can be used for teaching across the NHS to improve paediatric patient safety. This is what I want now, an opportunity to get out there and share Jasmines story with a national audience, for learning and improvement on a national scale. The things that went wrong for Jazzie are common themes, poor communication, lots of different teams not speaking to one another, assumptions, evening and weekend admissions, poor training, failure to recognise the deteriorating child, parents not being listened to.

So much good could come from openess and honesty and a willingness to learn from the two trusts. So much learning could be shared. I could finally feel free of this weight on my shoulders of feeling I have to get Justice in the form of truth for my girl. I could speak freely about what happened with the full support of those institutions involved. The paediatrician who gave me the answers I so desperately needed 3 years ago could write an article (co-authored by those involved if they were especially great) for a paediatric journal about this case for learning from a wider audience.

Why oh why do trusts behave in a way that means they are ticking the boxes and looking good, all the time covering up the truth. I'm not an idiot. It is crystal clear in my opinion that the two trusts involved knew exactly what really happened both before the inquest and during the time they carried out Root Cause Analyses (after the inquest occurred) All the bits that were 'missed out' from these two processes - it would seem too much of a coincidence that these were innocently glossed over to me.

I long for the day this ridiculous legal process ends and the real learning can begin - with or without the support of those that were involved. Perhaps they ought to consider how much better their reputation will be if I am speaking of their willingness to support me in sharing the learning from what happened than if I use their actions as an example to indicate why so much more has to be done to make the Duty of Candour ever make any real difference to families like us...

Postcode lottery

The 'postcode lottery' with inquests causes me incredible distress each and every day. So so so many people thought that once we had Jasmine's inquest verdict, that was it, and that quite clearly her death had been sad and unfortunate, but there had not been any wrongdoing. This is simply not true. I think the inquest failed to uncover the truth, and I will tell you how that happened.

It drives me insane! Jasmines care occured over 4 and a half weeks, she was seen by a vast number of people and different specialities. My barrister made it clear to the coroner that Jasmines inquest needed to be an 'in depth' thorough investigation in order to determine the true facts. He told her an 8 day inquest was required, he listed 21 relevant witnesses, and he said she would need to be advised by 'independent' neurologists and radiologists.

The coroner replied and said 'no'! We had a one day inquest, only 8 witnesses, and NO INDEPENDENT OPINION! Therefore the coroner asked the actual doctors involved in Jasmines appalling care what their thoughts were, and these were not thoroughly cross examined or questioned in any way, as there were no independent experts there to provide alternative opinion! On many occasions she even told my barrister to cease with his current line of questioning (It was clear she wanted to get through all the witnesses and wrap it up in one day)

My legal team had reassured me that despite the coroners reluctance to hold a sufficient enquiry, on the day it would become obvious there was no way the inquiry could be sufficiently held in one day. I don't think they were expecting her to cut off lines of questioning or rush through in the manner she did either.

We ended up with a verdict where EVERYONE in the room, My family and friends, legal teams, and press, were SHOCKED that the failures discussed throughout the day were not mentioned in the summing up, and the narrative verdict completely 'missed the point'.

Quite simply, the true facts of Jasmines case could NEVER have been ascertained in a 1 day inquiry, with very few witnesses and no independent opinion.
I have attended another inquest which would have also failed to identify the severity of the situation had  the barrister not been given the freedom to ask whatever questions he wanted and an independent expert not stood up and totally disagreed with the evidence of the clinicians responsible for the care at the end.

So this is what I mean by postcode lottery. It depends which coroner you get, and then it depends what they feel like doing. There are no rules!

Oh, and reasons why the coroner might have been in such a rush? Could it have anything to do with the fact our actual coroner, who had been working on the case for a year, had to resign from his job because he had employed his wife as a deputy coroner without her having the adequate qualifications? So therefore her caseload had doubled as she had her own work to get on with, and now had to 'get through' all of his cases too? So she had inherited Jasmines case very late in the day anyway, and she had a lot of work to plough through.. Did she give it the time and attention my little girl deserved? I for one say MOST CERTAINLY NOT!

It all makes me sick.

Do I feel better about things?

In 4 days time, Jazzie will have been an angel for the same amount of time as she was here with me. I hardly know how to cope with this realisation. Part of me wonders if I should be starting to 'feel better about things'? Do I, in fact, feel better about things?

Well, I don't wake up, and feel disappointed that I woke up anymore. So the depression has clearly improved. I still wake up, and the first feeling is an ache, a knot in my stomach, a loss and longing indescribable to anyone who has not lost their own child, and instantly identifiable to anyone who has.
But, I'm 'used to it' After almost 21 months of waking up feeling like that, there is a kind of acceptance that this is how I will feel every time I wake up, until I stop waking up. And that is ok with me. I'd rather have Jazzie here with me, but as that is impossible, waking up every day missing her so badly tells me she'll never 'fade' in my thoughts, feelings, ..my mind or my heart. That's the thing all bereaved Mother's fear so strongly when it first happens. What if there comes a day where you don't think about your lost love? I know now that won't ever happen.

I know I am not alone in this world. I have met, and continue to meet, other parents who have experienced similar things. We support each other. We share our experiences. We want the knowledge 'we never asked for' to be put to good use. We vow to improve things for future children. We want our children to have made a difference for others, and to continue to make a difference through the work we can do. www.mothersinstinct.co.uk.

I have a solid marriage. This was either going to destroy us or make us stronger. It hasn't destroyed us. There are times we hang on by a thread, but we hang on. We are both committed to doing that. So we know things will get better. We have had the low point, we are slowly climbing up out of the pit. We haven't been blessed with another child yet. So we are exploring our options. We both feel we need Jasmine's brother or sister in our lives going forward. We are not afraid any more, we know there is room enough in our hearts that Jasmine won't be squeezed out to make room for another. She won't be forgotten, she is part of the family. They will know all about her, our future kids, and it will be nice to share stories with them.. "You had a big sister Jasmine, she was small and very funny" (If anyone reads Charlie and Lola...)

Losing Jazzie forced a 'life audit' somehow. Things became a little clearer... those things worth worrying about, and those things not. Those people worth staying in touch with, and those not. It's not that I have anything against the people that cross the road when they see me, the people who said "Anything I can do?"... and then I never saw or heard from them again, or the people who couldn't stand to be around me in my crazed, paranoid, angry, obsessive phase. I'm not fussed about those who didn't believe when I went on and on about what I thought had happened. It's just that I really love and care for the people who did step up to the mark, to really be there and care for us, even when it hurt them to do so. Those are very special people, the ones I want to love and look after back, for the rest of our lives. So I simply don't have time for the others. It's actually rather refreshing.

What helps

My husband. The only other person on earth who misses Jasmine and mourns for her, as I do. The only one who knew her like I did, and loved her like I did. The only one who understands how it feels to have wished it had been you who died and not her, because he feels it too. 

My dogs, Bailey and Charlie. Cuddles available, any time, day or night. Unconditional love by the bucket load!

Friends and family who have contacted me regularly to see how I'm doing. It has been disappointing how few of these there are (if you don't count Facebook, which lulls people into believing they are in touch without ever having to pick up the phone), but those that have really have kept me going. xx

Friends who allow me to talk about any aspect of what I am going through, no matter how harrowing it is for them to hear, without making me feel guilty about it, or subtly suggesting I 'tone it down a bit' to protect the feelings of others. I have a few good friends who have done exactly this over the past 10 months, and they have shown courage and determination in being there for me. Hearing about it all is not easy for anyone, but those who really care lots, step up to the mark, Thank you, I have appreciated very moment you've spent listening. xxxx

Having met two other Mums in almost identical situations. Children we feel may have been failed by the NHS, mothers who felt forced to abandon their own instincts in favour of medical opinion, only for that to come back and haunt them for the rest of their lives. We help keep each other sane through the ordeal that is the complaints, and inquests, process.

My Bereaved Parents Group. We meet in Milton Keynes once a month, and we all get to be in a room full of people who have endured the same loss, carried the same pain, and to whom we need explain nothing. In that room we are 'normal' . It is a lifesaver and I am thankful the group exists.

My counsellor, and my psychologist. My weekly visits with these two wonderful women help me make sense of, and cope with, the reality of what happened to Jazzie, remind me that I did not fail as her mother because I was unable to save her myself, and help me cope with the aftermath of witnessing Jasmines suffering and death, and what that has done to my own health and state of mind.

Telepathy?

I have found it amazing how many people respond when my facebook status says I'm low by commenting 'Think of you every day', 'Think of you all of the time' , "always in my thoughts'.
How am I supposed to know this if they do not pick up the phone?
I appreciate people 'thinking' of me, but unless they pick up the phone, or come round, it doesn't help me much. In this case it definitely isn't the thought that counts!!
It can be very difficult to know people care about you if they spend so much time thinking and so little doing.....
This sounds like an angry post, I didn't mean it to be when I started to write it, but maybe I am a little angry about the thoughtlessness (how ironic), and emptyness, of 'thinking of you' comments.