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

After despair

Monday 22 May

Sounds almost positive doesn't it? 'After despair'.

I hope I haven't lulled you into a false sense of reassurance that everything is feeling much better now.

It's not.

The world will never be right again.

But I guess what has happened is that we have moved beyond what might be called the acute phase of grief and into the chronic.

There are times now when we are not incapacitated by grief and sadness.
When we smile, or laugh, or enjoy.
When we do things.

It's partly because, as one of my good friends said to me, we just have to carry on, that's what we do.

But perhaps it's also because as human beings we are not capable of doing extremes for ever. Most of our experiences and feelings moderate in intensity with time. 

I've recently finished reading a book called Elantris. It's set in a magical world in which there is a city in which the residents live a dull, twilight existence, and where pain never dissipates - every cut, bruise and graze stays with them forever, and they either learn to live with it or descend into non-existence, consumed by the distress and not capable of interacting with the world at all.

It's sink or swim, but that's a false choice as you can always swim with the right support anyone you.

And if you can swim, it's a lot harder to choose to sink, even if it's sometimes exactly what you want to do. 

As both Moses said in Deuteronomy, and Renton in Trainspotting: 
Choose Life. 

-----------------------------------------------------------------

Last week it was three months since Shani died.

Three months since that terrible day when we realized that we'd never see her smile again and all hope was banished from the world.

I used to write these blogs as a poem to hope - as a way to encapsulate the dread that I was feeling, to speak and share the unspeakable, to make it real and less terrible and easier to bear. 

And to make me realize that there was hope.

The black cloud was always on the horizon but never directly overhead.

The operation or procedure was always dangerous and risky but laden with possibility that things might get better for Shani.

The long term prognosis was uncertain and bleak but who knew what would happen to medical science over the course of the years ahead?

But what hope is there now?

We cannot hope for fun times ahead for Shani, for sunshine, laughter, snow balls, holidays.

For birthdays, singing, school plays, play dates. 

We cannot hope for medical breakthroughs, for stem cell cardiac regeneration, less risky surgery, heart-lung transplants.

What is there left?

There has to be something, for what is life without meaning, without a goal to strive for, without hope?

So I'm starting to wonder if I need to find ways of growing and building hope and meaning among the shattered remains of what has been left behind - the hole and emptiness in our lives that was created when Shani died.

Maybe one is simply to find the strength to cope and to support my family and find wonderful and fun things to do together.

There might be the hope that Shani's memory will burn brightly in other people's lives, that they will remember her fondly and kindly, and perhaps in some small way be inspired by the light that shone during her short life.

And perhaps the desire to build on Shani's memory by helping to improve the lives of other children with life-limiting conditions.

Without these things it's so very hard.

But with something to strive for, perhaps that will help to lift sorrow, to calm anguish and to ease despair.

Or at least make them easier to live with.

As Viktor Frankl put it in Man's Search for Meaning: 'Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.'

Now I am six

Sunday 9 April

Last Wednesday was Shani's sixth birthday.

Another first, 

another milestone, 

another step along the way, 

another tough day but one that we'll get through because 'that's what we do', 

another day to be together as a family and have some fun

another time to grieve and remember

another day of tears

Last Saturday we spent some time at the first Tea in the Park of the year - it's an opportunity for the local community to congregate and picnic and play in a small park and playground in Borehamwood. 

We used to push Shani on the swings here and watch her wander around the little climbing frame and help her zoom on her scooter up and down the park paths.

We don't really go into the playground any more because J and T are a bit too old but we watch the swings and imagine our Little S on there, having a great time, laughing and calling out 'push higher Daddy!'.

Likewise in synagogue, particularly on Friday evenings during the Kabblat Shabbat service filled with joyous songs and prayer, I picture Shani sitting where we used to sit, balancing and sitting on the folded up seats (because she refused to sit on the seats when they folded down from the pews), or wandering up and down the aisle like she owned the place and popping her smiley face around the mechitzah between the men and women's sections, or sitting on her own in the women's section because she was a big girl and could do that, or me carrying her during the beautiful tunes swaying and dancing together.

After we left Tea in the Park, we saw a giant rainbow appear in the sky, the first I'd seen since we left the hospital on the day that Shani died. Perhaps a sign from Shani to us and the whole community that she's also thinking of playing on those swings.

Sometimes I picture Shani and just smile ruefully, and sometimes tears come to my eye. Either way, for some reason I carry on reciting the prayers, perhaps because it feels like some kind of affirmation that life goes on, life without.

I used to be so excited by Shani's birthdays - she'd made it through another year, she'd outwitted fate again, she'd astounded the doctors, she'd smiled and giggled in the face of despair, she'd been normal yet again, she'd play with her wonderful friends and show how much she was enjoying life.

This year, Juliet had the lovely idea of taking all of the gifts that we had been sent for Shani whilst she was in hospital, and giving them to the community nurses that used to visit Shani at home to check that she was doing ok in between GOSH appointments. In particular to D who was the nurse that visited most of the time, and D said that she would ensure that the gifts were distributed to the other children that the nurses were visiting.

We might do something similar again next year to mark Shani's birthday.

The four of us spent the day in Brighton (well, Hove actually) being together and doing some things that Shani would have liked to have done:

eating white ice cream

playing in the Lagoon playground

sitting on the beach

filling a bucket with shells

watching the waves crash

And then, under a clear blue sky, reciting Now I Am Six, slightly amended, by A A Milne.

It's been a tough week - Juliet's birthday, Shani's birthday, Pesach approaching fast - but, with the support of one another, and our wonderful friends and family, we'll make it to next week intact and then start thinking about what comes next.

Happy birthday Shani 

Love you forever xxx

Life without

Friday 17 March

Today marks the end of the official mourning period for Shani.

It's strange that for a parent we are asked to observe mourning rituals for a full year, and yet for a child, when the thirty day sholshim period finishes you can if you wish go and cut your hair, listen to music, go to parties, and do anything else that the rest of the community does.

But of course it's not the end.

Far, far, from it.

I guess in some way it's an end, but really it's more like a beginning.

A beginning of life without.

It's a beginning of attempting to do a new kind of life without Shani being there.

Because despite the wonderful support that we've received from all of the amazing people around us, at some point, whether today or in a little while, it stops being possible to keep on providing and giving and loving so, so, so much, and it stops being healthy to keep receiving to such an extent, because we, ourselves and together as a family, need to try and find a way to cope with life without.

Shani will never go away, 
she'll never vanish from our thoughts, 
she'll never stop being part of our family, 
her presence will never leave our home, 
her gorgeous face and her teddies will always be around us.

Her voice, her laugh, her song remains in our ears, 
Her joy, her dance, her smile remains in our minds,
Her strength and her love remains in our hearts.

The pain, however, remains in our tears.

But perhaps, somehow, we might hope to become accustomed to it, 
learn to live with it, 
to use it to drive us to make the world a brighter place, 
and to make Shani's memory a blessing.

All of us.

Over the past few weeks, Shani (hebrew name Shoshana Esther) has been staring at us over and over again from within the words of the Torah. 
For two consecutive weeks, her name, the word Shani, has been read out of the Torah - 
Shani is turquoise and purple and scarlet, 
she covers the house and the presence of God in the midst of the community of Israel in the wilderness.

Last week we read and celebrated the Purim story of Esther,
her strength in dealing with a situation that seemed to have no way out,
the radiance of her inner beauty,
the hidden face of God.

It certainly feels that God is hidden right now.

There's a scene in the superhero movie Avengers Assemble where Hulk approaches the bad guy Loki, brother of Thor, the Norse God of Thunder, and batters and pummels him until he can no longer move, howling and crying out, 'puny God!'.

It's something I wish I could do - an outlet for my anger at the Divine, at the apparent incompetence or heartlessness of the Universe.

How could He leave us with a life without.

And yet it feels like I can't just throw away all of my faith - that would be too much - despite the deep emptiness within, there has to be a way to go on - I still have faith in my community, and I still need the supporting crutch of the rituals of our faith.

At the Shiva, Rabbi Chapper mentioned that the community mourns with us. People have said that the community is trying to find a way to help us cope with the months and years ahead. Perhaps a way to answer the question of 'what can we do?' when there's no longer any need for shepherd's pie or pasta bake is to carry our faith whilst we cannot, to believe and be the community of prayer that we can draw on when we are able, to sing and pray so that there are rituals for us to lean on, to be joyous and celebrate so that we can smile with you.

For if everyone stopped believing, there would be no community.

And if everyone stopped laughing, there would be no way to live a life without.

And alongside that we will remember and cherish the lifetime of love that we were privileged to share with Shani.

As A A Milne almost said

'So I think I'll be (nearly) six for ever and ever ...'

There are no words

Shani

Named after the ever-loved and wonderfully single-minded Grandma Janice, Shoshana Jan (or Shani) was always stubborn.

Stubbornness runs deep in both sides of her female lineage and thank God that it does.

As most of you know, Shani had a congenital heart defect called pulmonary atresia, which meant that she was born with a large hole in her heart and without the valve that links the heart to the pulmonary artery that takes blood to the lungs to be oxygenated.

And so, when she was in vitro, incredibly she found a way to grow and connect two other arteries to her lungs to provide them with blood.

When Shani was a baby, she needed to have an operation to link up these two arteries and fix them to a tiny Gore Tex tube implanted in her heart where the valve should have been.

Having seemed to be making good progress, at 20 months old Shani suffered from heart failure and spent two weeks in hospital trying to recover.

We were told at that point that she wouldn’t make it, and yet over the next four years she grew into the beautiful little girl that we all know and love, full of spirit and tenacity, living and loving life and bringing joy to the people close to her.

She had a radiant smile that lit up every room, a gorgeous giggle and a cuddle that melted your heart.

Shani was never able to do quite as much as those around her but she didn’t seem to see this in any way as a disability. Instead it was more like a super power. She had a Magic Heart that enabled her to overcome impossible odds to make the world a brighter place whilst shrugging off injuries that would incapacitate the vast majority of people. In fact, one of her doctors recently told us that only a trained Sherpa carrying baggage up Mount Everest would cope with the low oxygen levels that Shani had throughout her life.

Shani was in many ways just like any other five year old girl. She would play for hours with her Barbies, her Disney princesses and her Lego Friends. She would trundle around inside on her little scooter and she loved being pushed on playground swings. She loved dancing and showing off her dress at Joel's barmitzvah. When I got home in the evening, if she wasn’t already playing in the bath, she would toddle into my arms with a big kiss and a cry of Daddy! And she loved very much to spend time with Joel and Tammy, with her wonderful grandparents, with her aunties and uncle and with her gorgeous cousins Maia and Lev.

She loved going to school at Immanuel Prep and had made some really close friends in her class that took good care of her: understanding when she had to stop playing and sit at the side of the playground and then sitting and chatting with her rather than leaving her ignored. I say that she loved going to school – she loved being in school, getting her to go into school sometimes ended in a screaming fit with Jules or I often walking away torn between admiration for her fighting spirit and concern that she was going to do herself a damage!

Last Summer, Shani took part in school Sports Day. She was in the pick-up-the-vegetables-as-you-run-along race, and though admittedly she was given a head start on the other girls, our wonderful girl managed to finish in the medals, in third place! Might be worth pointing out that there were only three runners in the race … but that’s not what matters – Shani gave it a go, ran the whole race, and was smiling about it all day, thrilled that she’d taken part and that everyone was so proud of her!

Despite all of this life, two weeks ago, Shani had to go into hospital for a necessary but difficult operation. She had been slowly deteriorating, her oxygenation and energy levels dropping and becoming visibly bluer. The operation would replace her tiny Gore Tex tube with a proper heart valve, which was risky, but it was also very uncertain how her weak heart would react to the ‘large insult’ it was given (as one of her nurses put it).

Many of you will know that there were big complications both during surgery and in the two weeks following. Initially we thought and believed that Shani was going to fight her way out of this one as well but it turned out that we were praying for one miracle too many.

Shani’s heart eventually gave up the fight and let her leave this world at peace, free of discomfort, pain and distress.

During that time, Shani was cared for in hospital by some incredible nurses and doctors, and at the same time we were immensely strengthened by the support we received from our wonderful friends, family and community.

On leaving Great Ormond Street yesterday for the final time, I saw a rainbow over the hospital. At the same time in Rehov Shani in the Israeli town of Modiin another rainbow shone in the sky. Perhaps a parting gift from our wonderful little girl, like a rainbow always with us but nowhere we can hold and kiss, a light shining in the heavens and a constant reminder of the daily miracles in our world.

Now I Am Six, by A A Milne, slightly amended. 

For Shani, aged five and three quarters

When I was one I had just begun

When I was two I was slightly blue

When I was three I was really me

When I was four I was so much more

When I was five I was most alive

Now I am (nearly) six I’m as clever as clever

So I think I’ll be (nearly) six for ever and ever

Three more sleeps

Sat 28 Jan 2017

Last month, during each of the eight evenings of the Jewish festival of Chanukah, we lit the celebratory candles and, as a family, sang the traditional song of Mo'atzur.

It's a song with a tune that sounds not unlike a Christmas Carol but each verse describes a different episode of Jewish history in which, as the saying goes, 'they tried to kill, we survived, let's eat'.

The final verse picks up the story of Chanukah and, referring to the part of the story where the Jewish people survived against the much more numerous Greek army and managed to keep the Temple Menorah alight for eight days instead of the expected one day, contains the line 'who performed miracles for his beloved' which translates from the Hebrew 'na'aseh nes lashoshanim'.

Given that Little S's name is Shoshana, for us these words take on a much more poignant reading, that God 'performs miracles for Shoshanas'.

Little S knows that her name is in the words of Mo'atzur and gets excited whenever we get to the final verse, smiling and dabbing as her name is sung out!

With the operation postponed from early December until this coming Tuesday, we were given eight opportunities that we would not otherwise have had to sing for miracles for Little S.

And it feels like we might need all of the miracles we can get - I'm scared.

-------------------

This evening I watched Avengers Age of Ultron with Little S's brother J - a movie about superheroes overcoming impossible odds to save themselves and the world whilst shrugging off injuries that would incapacitate or kill the vast majority of people.

Sound familiar?

Little S has been surviving and thriving against the odds for almost six years now - where Captain America has his vibranium shield and Thor has his hammer Mjolnir, Little S has her magic heart.

Well she's about to face a stern test over the coming days and weeks - I have hope and confidence that her courage, fortitude and sheer bloody mindedness will carry her through and that she and her magic heart will be stronger as a result.

But it's not going to be easy.

And even if everything goes as well as it possibly could, she not going to like it one bit.

--------------------

Assuming that the operation doesn't get cancelled, the days and weeks ahead are going to be tough for all of us, especially but not just for Little S.

As much as we could we've tried to just get on with life and be as normal as possible - it's always seemed to be a good strategy - it kept us and the kids on an even keel and stops you thinking too much about what could go wrong.

However, this week we're not going to be able to just carry on as normal, much as we might like to.

It's at times like this that we know that we'll be leaning heavily on our wonderful family and friends for support, both logistically and emotionally.

The logistics are important, of course they are, and the kids couldn't get on with their lives without everyone's help.

But the emotional support is incredible - to know that so many wonderful people are rooting for and praying for Little S provides a mental safety net and makes us remember that we are not on our own.

As Peter Gabriel and Kate Bush put it: 'when times get rough you can fall back on us - don't give up, don't give up'.

Emotional roller coaster

Tuesday 20 Dec 2016

This time last week Little S was scheduled to be in the Cardiac Intensive Care Unit (CICU), recovering from open heart surgery that would have provided her with a bigger pulmonary valve and given her more puff, more energy and make her less blue.

Today or tomorrow she would have been scheduled to leave hospital and come home for a 4 or 5 week recovery period.

Instead, on the morning of the day that we were due to go in, GOSH called off the operation because Little S had picked up a cold virus.

She often struggles with a cold at the best of times, so giving her the challenge of recovering from major surgery whilst feeling a bit under the weather? No, I don’t think so. That would not be a good idea.

GOSH knew that she had a virus because they’d tested some snot that, on the previous Friday, they’d sucked out of Little S’s nose!

On that Friday, we spent the best part of the day (did I say ‘best’?) convincing, conniving and cajoling Little S though various tests – bizarrely, she was quite content during the hour and twenty minutes that she spent having an ultrasound (probably due to the well-placed TV above her head showing CBeebies the whole time), the ECG wasn’t too bad, and even taking the bloods was no worse than usual, but she screamed through height, weight, SATs and mouth swabs like they were the start of the actual operation!

Apart from Little S being in the main brilliant for most of the day, I think we also owe a huge debt to the wretchedly addictive iPad app Colour Switch (I’ll make it past Level 4 next time!) for helping us pass the time. 

We would have made it home sooner but we were asked to wait for quite a while for Mr K, the surgeon that was going to do the operation, and the same surgeon that operated on Little S five years ago - he was in surgery for most of the day. 

We felt that it was important that we met him though. Despite the fact that he reminded us of the some of the big risks involved in the operation, there is a reassurance that comes with having met and spoken to the man that is going to hold your baby's life in his hands, especially as he also reminded us of the real need for the operation (but not so urgent that we shouldn't wait until Little S's virus passes) and the intimate knowledge that he has of the condition of Little S's heart and arteries.

Whilst we waited for Mr K, we (including Little S) were shown around the CICU - it's changed a lot since we saw it last five years ago: much newer, quieter, more spacious and more modern - a lot less frightening. We even told Little S that this is where she would be after her operation and she didn't seem too freaked out.  

She was also with us when we spoke to Mr K - not sure that that was our smartest move, although it didn't seem to have much effect - Little S just carried on with her Colour Switch moves and didn't take much notice of our conversation but I bet she picked up on at least the odd word and phrase.

Over the next couple of days, during which we weren't sure if the operation was going ahead or not Little S got very upset before going to bed a couple of times, crying that she didn't want to have the operation, although it made us feel better to some extent when we got her to explain why she was worried and the worst fear she had seemed to be that she wouldn't be able to sleep as they would keep waking her up during the night!

The upshot was that having had all of the emotional preparation for a major operation, and worrying big time about the possible things that could go wrong, and assuming that we would effectively have to cancel Christmas this year, we've ended up with our holidays back and we wait for the date of the rescheduled operation. 

Monday 26 December

It's both Boxing Day and the third night of Chanukah tonight and we're able to make sure that Little S has a wonderful holiday and to forget for a while about the operation. 

We've been told that it will be on 31 Jan with Little S going into hospital the night before. No need to do pre-ops again. 

This afternoon Little S asked, apropos of nothing, whether she will be able to do more stuff after her operation. 

We said that she'll probably still need to use her wheelchair but that she'll have more puff and should be able to walk or run a bit further, climb a few more stairs and feel a bit less tired. And it should prevent her ending up with less puff, which she might do if she doesn't have the op. 

It's a bit of a hard sell keeping her feeling positive about the operation whilst not worrying her too much about the consequences of not having it. 

Meanwhile she's having a lovely time in Brighton, and as long as she's smiling and happy, so are we. 

So whilst the sun is out and the skies are blue, Merry Xmas! Happy Chanukah! And a very happy and healthy new year to one and all!

The Chapel

Tuesday 27 September 2016

There have been times when the sun disappeared, when all we could see were black clouds, and when we hadn’t known if we’d see the day again.

There have been times when Little S could not be comforted or cuddled or sometimes even touched, and when there was nothing we could do to help her other than pray and try to stay strong.

In those times, she is in the hands of some amazing medical professionals – it is their skill and judgement, her stubbornness and fight, and the Divine decree that decides her fate.

And we just watch … and wait … and cry … and, if we have the strength, talk.

Talking is so important, and yet it can be so difficult. Because once you verbalize a thought you make it real.

Sometimes it’s the first step in helping you deal with it – it’s no longer a demon preying on you – you’ve given it form and shape and boundaries – and you’ve remembered that you’re not alone – and that is a source of such strength.

But it always feels like making it real is such a horrendous risk to take – maybe if I don’t talk about it, it will go away? What if I’m not strong enough to bear the words? Making it real might break me.

Sometimes it helps to be alone.

There is a room in Great Ormond Street Hospital that offers a place to do just that – it’s called The Chapel.

It’s quite a small room – a bit like a church, with biblical inscriptions on the walls and a statue of Jesus at the front, but unlike any church I’ve been in, it’s stuffed full of teddy bears!

And it’s a quiet room – one that encourages reflection and stillness – a place to gather oneself.

In the run up to Rosh Hashanah, the Jewish New Year, we are supposed to step back and think about our priorities in the world – what is it that is truly important and worthwhile to us – where should we be putting our energy over the coming year.

It’s a time to remember to seize the opportunities inherent in every day – to remember that most of our problems are not really problems, they are just noise, a distraction from focussing on the real meaning in our lives: our children, celebrating joyous occasions together, drinking in the wonder of the universe around us, making the world a better place.

It’s something that I often do not remember, even when I’m pushing Little S to synagogue in a wheelchair – we might be a bit late, she might have been a bit naughty, it might be raining – all too easy to forget.

But Dr D is giving us a big wake-up call – we received a letter from GOSH to say that Little S’s next major op is being scheduled and will probably be sometime in the next few months. When you open a letter like that it halts you in your tracks – the world carries on around you as you stare at the black typed words on the page or screen, feeling like the black cloud is rushing towards you out of the corner of your eye.

And Dr D is not the only one giving us a wake-up call – as with four years ago, we’ve been agog watching the Paralympians – champions over adversity, destroyers of limitation, superhumans – racing down the track or through the water with what we would normally think of as a disability but what they’ve turned into an opportunity - inspirational.

Little S knows that she has a ‘magic heart’. She knows that she needs a wheelchair to get around any distances more than about fifty yards or so. She doesn’t call this a disability. It’s just how life is.

The things that she does complain about are the same things as any 5 years might: shouting that she wants to watch one more episode of Spongebob Squarepants, screaming that she doesn’t want to go into to her new Year 1 class at school, refusing to brush her teeth.

Strangely, whilst I have to keep reminding myself to not complain about the little things, I’m quite happy to be reminded that Little S has the strength to kick up a fuss about something so trivial!

So the black cloud is looming but for the moment I have an awful lot of simcha and joy to look forward to: it’s the Jewish New Year, it’s Little S’s older brother’s Bar Mitzvah, it’s a time of many opportunities to celebrate with family and friends, all within the next month.

Black clouds are going to have to wait.

Shana Tova U’mtuka (have a happy and sweet new year)

Where there's a wheel there's a way

Until a few weeks ago, if we walked anywhere more then a hundred yards or so with Little S, we would need to push her in a child's buggy. Given that she's now over five years old it was getting to be a little bit silly - should a five year old really still be in a buggy?

Now she's much better off thanks to the NHS and their provision of a child's wheelchair.
It took about four or five months from applying to getting hold of the chair but they came through and, as with all of the amazing facilities that we make use of within the NHS, it is provided for free.

It lets her sit up and see more of the world around her and makes it a lot easier for us to talk to her as she's moving - it also means that people walking past realise that there is good reason that she is not walking - which I suspect will become increasingly important to us and her as she grows up.

Of course, being a five year old girl, we've decorated the chair in pink and purple ribbon - wouldn't you?!

---------------------------

Little S has started talking to her heart, or more accurately, has received some messages from her heart.

She’s starting to become a lot more aware of her ‘magic heart’ and sometimes gets told by her heart that she shouldn’t walk any further or that she should slow down, or perhaps instead that she should keep playing on the climbing frame.

She's also mentioned that she sometimes has to ignore the messages from her heart as it's hard to concentrate at school sometimes if she doesn't!

She will still say sometimes that she’s ‘not got any breath’ or just ‘too tired’ but I think she’s starting to learn the difference between being tired in the way that everyone gets tired sometimes, and genuinely not having enough breath because her heart is struggling with the amount of oxygen that it gets.

I think this is part of her becoming more aware of her heart and the implications. And we’re certainly also talking to her more about how hearts work and what it is about her heart that is a little bit different to most!

Despite becoming more aware of her differences she doesn’t seem to be at all frightened at the prospect of having a heart that doesn’t work as well as other children’s hearts. We haven’t mentioned any of the potential dark clouds on her horizon and pointed out any of the downsides because it's too terrifying a prospect and doesn't feel like it would help her at all right now. 

I suspect though in time as she develops more awareness she might either start asking, or just worrying, about that sort of thing. So important to start having little ‘heart’ conversations now to ensure that we’re all able to talk about more difficult subjects should we need to.

In the main though, the last few months have been fairly steady in terms of her weekly sats check from the community nurse – Little S is normally about 76% which, to put in context, is a little above the danger zone of low 70’s / high 60’s in which, should she be there regularly, Dr D would want to get on with surgical plans.

Things are not always steady of course – during one week recently, the community nurse arrived during one of Little S’s screaming hissy fits!

Little S wanted something really important to her (like a biscuit or a TV programme) and we had decided that we weren’t giving in as she had been quite demanding and rude in the way that she had asked for it.

It’s always difficult to balance the desire as a parent to let your child just scream on the naughty step versus wanting them to be quiet and just let them have what they wanted -for us, we also have to include our fear that by letting her scream she’s going to cause herself to be sick or worse, as she puts additional stress on her heart.

She’s certainly made herself sick before and ended up pretty drained as a result.

This time we managed to calm her down, eventually, and the community nurse took it in her stride, but her sats we're not so good that week :(

-------

Sports Day this week and Little S wasn’t going to be left out!

She took part in the pick-up-the-vegetables-as-you-run-along race and she was given a head start on the other girls - our wonderful girl managed to finish in the medals, in third place!

Might be worth pointing out that there were only three runners in the race … but then again that’s not what matters here – Little S gave it a go, wasn’t going to be left out, actually run the whole race, and was smiling about it all day, thrilled that she’d taken part and that everyone was so proud of her!

Surprisingly high sats

Wednesday 24 February 2016

Little S had surprisingly high sats this week – 78% when the community nurse came over on Monday and 84% when Little S went to Barnet Hospital today. 

Although she is no stranger to hospitals, she wasn’t supposed to be in hospital today – this wasn’t a planned visit – she was only there because she fell off a space hopper at school, bashed her head and had a big lump appearing by the time J arrived to pick her up! 

However, once they reached the hospital, with big sis T in tow, Little S was feeling much better and quite enjoying the attention! And with sats of 84%, J wasn’t too concerned either. But the hospital staff were worried as Little S is a bit complicated and red-flagged on her notes as a child to be particularly careful about. 

So, after an hour of waiting for a consultant and with Little S clearly fine, J took the executive decision to discharge her herself and headed back home. 

Even her sats earlier in the week had no right to be as high as they were (note the relative use of the word ‘high’ and remember that most of us would be dead with sats of 78%) given that she was off school that day as she’d been sick and under the weather that morning.

Seeing sats in the high 70’s (and over 80 at hospital) was particularly encouraging, with the reading in Barnet Hospital corroborating the community nurse’s figure earlier in the week, as her sats had been stubbornly low (around 72%) for about three months now, and it had looked like the procedure that she had done in October was not having the effect that we’d hoped for.

Back in October her sats had increased to around 80% but only for the week or so following the catheterisation performed by Dr D that dilated her pseudo pulmonary arteries in four places in order to improve the flow of deoxygenated blood from her heart to her lungs and thus increase her overall oxygen levels – 

I say ‘pseudo’ pulmonary arteries because, as you may well remember, they were constructed during major surgery by combining the extra arteries that Little S had created in utero from her left subclavian artery (from her shoulder) and her right coronary artery (from her heart) before the amazing GOSH surgeons attached them to a small GoreTex tube that took the place of her missing pulmonary valve.

The cath procedure was a lot less risky than major heart surgery but still involved general anaesthetic and had the potential to cause a number of nasty complications if things didn’t go to plan. 

The good news was that it was a lot smoother from our point of view than the previous one in Nov ’14 – 

waiting on the day ward with familiar, friendly nurses that have got to know Little S over the years; 

better, calmer ‘bedside manner’ during the pre-brief which put us more at ease; 

a better anaesthetist, able to slowly, slowly send Little S to sleep without any plaintive cries for help; 

and, most importantly, a phone call of reassurance when the procedure was over letting us know that everything was fine and not (you’ll remember from the year before) creating panic, fear and uncertainty for the longest ten minutes until we saw our gorgeous bundle waking up with her teddy beside her and wishing mummy was there.

Like the previous year it only took an overnight stay for Little S to be ready to head for home – indeed, by the time I’d arrived back at GOSH the following morning, Little S was out of bed, and her and J were playing on the floor, packed and waiting to ‘check-out’: my Dad had come up to London to spend some time with them, bless him, and I suspect hadn’t banked on them leaving the hospital so shortly after he’s arrived! But it takes more than a general anaesthetic and 3 hours of someone fiddling with your arteries to stop Little S getting back home!

Since the cath, Dr D has been talking about a plan for the next stage which would involve more major surgery to replace the GoreTex tube with a proper valve that could be resized as required to grow with her over the next few years and potentially into adulthood. 

To have a plan like this now is amazing. 

Since December 2013 we’ve not been able to think for anything more than a few months ahead as Dr D had not been convinced of Little S’s resilience to invasive surgery. But with the success of the last two caths, he and the other surgeons at GOSH are prepared to take the next necessary step, although not until Little S’s sats show a further drop below 70%, which would indicate that she’d outgrown the GoreTex tube and needed something bigger to provide her body with sufficient oxygen.

We’ve also been asking Dr B’s opinion in Israel. He also thinks we should get on with the valve replacement, and sooner rather than later. But he has a disagreement with Dr D.

Dr D thinks that if and when we do the surgery we should not also close the VSD (the hole in  her heart) whereas Dr B thinks we should. I’d like to understand more about why they think different things before we get to the actual surgery – hopefully the two docs will discuss and come to a consensus on what the right way forward is: if they don’t then I’m not quite sure where that leaves us.

But the great thing is that there is a way forward for Little S, one fraught with great risk, but a way forward nonetheless – hope, again.