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

Immanuel Prep tribute to Shani

This article was written by Shani's wonderful Headmistress, Alexis Gaffin, for the end of year school newsletter, published in July 2017, where it was accompanied by a gorgeous photo of Shani at sports day.

Whilst this year at I.C.P.S. has once again had many highlights, we also suffered a terrible loss. It was with a heavy heart that we heard of the death of Shani, our girl with long plaited braids, a pink floppy hat and a smile that could light up the darkest of rooms.

Shani was born looking perfectly healthy. At six weeks old, doctors told her parents that she had in fact been born with a congenital heart defect called pulmonary atresia, meaning  that she had a large hole in her heart and was missing the valve that links the heart to the pulmonary artery. Shani had her first operation as a baby; surgeons at Great Ormond Street Hospital implanted a tiny Gore-Tex ® tube into her heart where the valve should have been. She seemed to be making good progress and the doctors were cautiously optimistic. Then, at 20 months, Shani suffered from heart failure and spent two weeks in hospital trying to recover. At this point the doctors told Mr and Mrs Berman that she would not make it. She did.

When Shani joined Immanuel College Preparatory School she was like every other child at the beginning of their schooling; enthusiastic to learn, unsure of letting mummy go, excited to try to do things at ‘big school’ and keen to make new friends. We knew that Shani had a ‘magic heart’ and we wanted to facilitate her pathway to independence in a safe and secure way. Mr and Mrs Berman assured us that Shani knew her limitations and that she could be encouraged to participate in everything as she would let us know when it was time to stop. So began Shani’s time in our care.

Shani was determined to achieve her best, loved to learn and to enjoy herself and was kind to everyone around her. She took part in most activities happily and we respected her indication that she needed to be cautious. She preferred to sit with a book or chat with a friend at playtime rather than take part in games and she always had company. She was often the referee or judge during PE activities but was unwavering in her effort to cross the finish line at Sports Day, achieving a personal best in so many ways and leaving us all both so proud and so awestruck.

In November of last year Mrs Berman contacted me to tell me Shani would need to have surgery as her oxygen levels were becoming further depleted. We prepared for her last days at school prior to the surgery, which included Mum attending the dress rehearsal for the Chanukah Show, as surgery was scheduled to coincide with the main performance. Unfortunately, Shani caught a chest infection the week before and so the operation was postponed. The positive side was that we had Shani at our show Little Brave Hearts in which she told the audience: “I was brave when I saw a big dog in the park”.

Shani and I swapped smiles on what was to be our last day in school together. She gave me one of her biggest and brightest and I hope that I did the same. She left with an agreement that when we next met she would have another big smile ready for me and I know that when she said it, she meant it. The picture I have of her in my mind is from that day.

We all learnt so much from Shani, lessons that she effortlessly taught us as she went about her daily life. We are blessed with so many memories that even in her absence she continues to teach us. During our first week back at school children in all the classes wrote their own memories of Shani - she touched them all. “Shani had a big smile”, “Shani always waved at me when I walked passed her”, “Shani always tried her best ”. We continue to talk about her and wonder what she would think or feel in different situations. Her classmates refer to her regularly, and with ease, and love having some of her teddies in their classroom.

All our children, from Reception to Year 6, honour Shani’s memory in the way that they care for each other and the efforts that they have made to care for others. They have raised an incredible £2,400 for Great Ormond Street Hospital, where Shani was cared for throughout her life. I am grateful to all the parents and families for making this possible. In addition, thanks go to the parents of Year 1 for the donation of a friendship bench, which sits in Shani’s favourite place in the playground, and to the PSA for a pink rose bush. Shoshanah, Shani’s full name, means rose. As it blossoms, I will think of her, for it encapsulates her: sweet, fragrant and giving of pleasure to others. May her memory be a blessing.

Alexis Gaffin – Head of Preparatory School