Inquest

Monday 10 July, St Pancras Coroner's Court

Today I went to court.

To a Coroner's hearing.

For the inquest that was opened the day that Shani died.

I had woken up in a lovely hotel with my wonderful wife, having spent a very relaxing and invigorating Sunday doing little apart from a bit of swimming, strolling, chatting, eating and just spending time together in a way that we haven't been able to do for years.

When people talk about the overused phrase 'quality time' this is what they have in mind.

Unfortunately, due to the inquest, our stay came to a swifter end that I had intended as I had to get to St Pancras by 9:45 on Monday morning and, bearing in mind that I've been hobbling with big black plastic boot on my foot for four weeks since I broke my fibula bone after getting my ankle stuck in a pot hole on a morning run, I needed to make sure that I left the hotel in good time.

About 45% of deaths in the UK are reported to a Coroner and it's their job to decide whether there are any questions that need answering in order to properly understand how and why the death occurred. If extra information is required then an inquest is opened, questions are asked, statements are gathered, and often witnesses are asked to appear at a hearing in order to find out what happened.

At our hearing, our consultant Dr D, our surgeon Mr K and the intensive care consultant Dr P were all asked to appear.

This was a public hearing in which my daughter was going to be discussed and a public declaration made about the cause of her death. 

I was not obliged to go.

But as Shani's Dad I had to be there.

I met Juliet's Dad Geoffrey at the court to ensure that I was not there on my own, and we both spent a few minutes before the hearing exchanging pleasantries with the doctors.

Juliet had decided not to attend - which was a pretty sensible decision (as Juliet's decisions normally are) - we didn't both need to put ourselves through this ordeal.

The hearing itself took place in a small court room, with a raised bench for the Coroner, a raised box for the witnesses, and a few rows of seats for us, the witnesses, clerks and volunteers, and any members of the public or the press that might decide to sit in (thankfully no one did).

Each witness took the stand in turn, and the Coroner asked them to explain how Shani came to be in their care and what happened whilst she was. For Dr D this meant providing a potted history of the past six years, from the very first time that he met us when Shani was just six weeks old - the day that we realized that this was not just a simple heart murmur and that nothing was ever going to be the same again.

Both Drs D and P were very professional in their delivery but also spoke compassionately, looking at us with sympathy - it was not a purely dispassionate, clinical discussion.

Mr K did try his best to be sympathetic and compassionate but, as a surgeon, I suspect that he had most emotions drilled out of him long ago. Don't get me wrong, i'm not saying that he does not care, far from it, he does incredible things to save children's lives on a daily basis, just that he's a little bit more clinical than the Drs in his interaction with people.

It was a hard couple of hours listening to the Coroner's questions and the doctors responses. Pretty intense and saddening but all handled with dignity. 

I asked a few questions as well - after each witness, the Coroner asked me if there was anything that I wanted to ask them.

I wanted to find out a bit more about why, whilst Shani was on the ECMO heart and lung bypass machine for two days following her cardiac arrest the day after the operation, they didn't carry out a catheterisation to see if it would help them to figure out why the cardiac arrest happened, particularly if it was due to problems with her arteries. After all, we already knew that during the operation Mr K found that her pulmonary arteries were blocked and had to repair them. It turned out that they already had information implying that the arteries were ok, and that Shani was already too weak for an invasive procedure like a cath.

Although the Coroner did ask a bit about this, I also wanted to hear a bit more about why the operation was necessary at all, and what the outcome would have been for Shani if she didn't have the operation.

Of course, no one could say for certain, but the doctors basically confirmed what I already knew, that Shani's life chances were deteriorating, that she was only going to get worse, and that we would not have had a lot of time together before things became distressing.

Somehow, I felt a small wave of relief when this was reiterated in open court: however terrible the outcome, we really had no choice but to agree to have the operation.

Dr D suggested that since the operation he had been questioning whether or not they had got the timing right, and whether things would have been better if they had operated a bit earlier. The consensus seemed to be that it wouldn't have made much difference to Shani's chances. On the other hand, there was some real value for us as a family in having those extra few months together.

Feeling that I needed to add something, I took the opportunity to point out that we had some wonderful times together in the last few months of Shani's short life.

We have some gorgeous memories of Shani from Joel's Barmitzvah in October - it was such an amazing party evening and Shani loved it.

And Shani also was able to take part in her school's Hanukah play Little Brave Hearts in which she told the audience: “I was brave when I saw a big dog in the park”. I pointed out that that really summed up Shani's attitude to life - she just got on with it and never worried about her magic heart and what it might mean  for her future. Despite the fact that she knew she couldn't do everything that her friends could, I don't think she ever saw it as a limitation to life.

By the end, both Dr D and I got pretty emotional.

Thinking about it afterwards, it felt that it was actually really important to me that Shani and her case were discussed in such detail in a public and official forum. It made me feel that officialdom cared about what happened to her, that she was missed by the hospital and those that looked after her, and that 'the system' had checked that everything had been done that could have been done and that they tried to learn from Shani's care to try and improve future care for other children.

And by being there and speaking it made me feel that this was being done with us rather than to us.

In some way, it also removed a cloud of uncertainty from above me.

I guess I knew that there was no misdemeanor or negligence to uncover, but until the Coroner had actually pronounced the cause of death at the end of the hearing - cardiomyopathy (heart failure) and surgery required as a result of pulmonary atresia with ventricular septal defect and mapcas - I wasn't able to close a question in my mind about exactly what had happened.

In summing up, the Coroner said that she thought that Shani sounded like a very special and brave young girl.

I said that I thought she was Magnificent.

------

This is where
This is where the bottle lands
Where all the biggest questions meet
With little feet stood in the sand

And this is where
The echoes swell to nothing on the tide
And where a tiny pair of hands
Finds a sea-worn piece of glass
And sets it as a sapphire in her mind

And there she stands
Throwing both her arms around the world
The world that doesn't even know
How much it needs this little girl

It's all gonna be magnificent, she says
It's all gonna be magnificent

Elbow, Magnificent 2017