Holding it all together #2 At Home Again

After I had been in hospital for a week, Pineapple's father picked her up from school, and let her know the good news that Mummy was already out of hospital, and even better, at home.

Rather that skipping off delightedly, to get back as soon as possible as expected, she stopped and asked him gravely:

'Oh. Has the baby died then?'



We had spent a long time explaining to her that the doctors had operated, and if all was ok after a week I would be able to come home. But obviously we had not explained enough. After all, the last time I was in hospital for a week, the death of a baby had been her experience too.

I am home, but not out of the woods. I am on strict bed rest, sofa rest, house arrest. This involves simply choosing a side to lie on, and occasionally swapping sides. I can get up to move about a little, to use toilet and bathroom for example. Stairs are to be avoided. Its a daunting proposition, not just for me but for everyone who lives with me. I have at least three more months of it. But, I would rather be at home than at hospital, and I am completely delighted to have even been given this challenge at all.

During the operation they found that things were worse than they thought, hence the week for observation. That I did not lose the baby immediately was a good sign, and this continued for the week. Although it was all so frightening because it was so similar to your loss, I have consoled myself by noticing all the points that were different, and reminding myself constantly of those. But I cannot deny its been tough.

Pineapple told her Dad that she had something to say to the baby when she got in.

It was lovely to see her, and for the first time in a week, not from my hospital bed. She rushed over and hugged my stomach, and whispered to it:

'I love you, Marge.'

Mummy, isn't it true that.....

'Mummy, isn't it true that six babies have died in your tummy?'

Pineapple asked while visiting me in hospital this afternoon, delighted to be with her big sis, who is over from England.

Big Sis gasped, her eyes wide open.

A few weeks before you were born, Matt, and before we realised the sadness that would come in the next few weeks, we thought the challenge would be to help Pineapple adjust to not being an 'only child' after you arrived. Having a Big Sis who visits and spoils her is lovely, but not the same as a full-time baby. We let her know that she was very loved, and that we had waited a long time for her, that there had even been a few babies that had not made it - just to emphasise she was special. If I kick myself now for telling her, I have to remind myself that she heard this story anyway in the consulting room a few weeks later. It has stuck with her, but today was the first time I have heard her do the maths.

'Yes, but it wasn't six, it was five sweetie, and some were very little' .

I don't think their size in anyway diminishes the losses, I was just looking to take out some of the sting. For me, for everyone.

'But I was.... I was ok! .... I think its because I didn't move much' she pondered.

'Oh you moved plenty - especially your mouth' her Dad said.

Pineapple was notable for 'talking' through all her scans. The technology of scanning allows such an early insight into the soul being carried, at least in my sample of one. This child has a lot to say.

'Yes - you managed it, you were ok, that was really clever!' I said and shook her hand. We had a laugh. But I do share her trouble in understanding this all.

Thankfully, with perfect timing, a midwife popped in to listen to the baby's heartbeat. We all listened together. Baby is just fine.

Big sis said the beat of the heart and the interference sounded like the intro to a dance track she liked - 'Two Receivers' by the Klaxons. I listened later and agreed.

It was a sweet moment, and I hope so much it will be a better memory for both of them. These two do not need any more exposure to the impact of babyloss. For them, I pray for some better experiences and associations.

A reason

So, I think we finally know how, and why, we lost you, Matt. Its long, so bear with me.

I mentioned that before Pineapple was born, we had a bad time. We were investigated for recurrent miscarriages, after Hoshi, Sitara, Astra and Star. It was devastating, and hard to understand what the doctors meant when we were told it was 'good news' that no cause could be found. What they meant was, it was just very 'bad luck'. We had a very good chance of having a baby, and Pineapple proved them right.

What I suspect now, is a subtle twist. If we were 'unlucky' to have all those miscarriages, we are certainly so lucky to have Pineapple. And I mean, at all.

After three of the four miscarriages I was admitted to hospital for d+c's. In turn, Pineapple's own birth was legendarily quick for a first birth.

At your autopsy, the results were ambiguous. Either there had been a weakness in the cervix which caused premature labour, and also allowed in infection, or infection caused the cervix to open prematurely leading to premature delivery. Because we had Pineapple, the first theory was largely discounted. She too, the argument went, would have suffered the same fate if it was down to a weak cervix.

However, as there was no certainty I would be monitored for both (susceptibility to infection and a weak cervix) in any subsequent pregnancy. Again, as before, your loss was down to 'bad luck'.

It was hard to swallow. Not just because my glass is half full, but just calculating the odds had my head reeling.

Just how unlucky are we talking here?

Well, depends how you calculate it, but for 4 miscarriages in a row that could be 1:160,000.

For those plus a mid trimester loss that could be 1:40,000,000. Very high odds. But I have met other similar unfortunate women in chatrooms. Its unusual but I am defintely not alone...

I started doing the lottery after the early miscarriages to allow some good luck for a change, after all this talk of 'bad luck'. I still do it now.

Later, pregnant again and in front of the French gynae, the reaction was similar, if less equivocal. It was almost certainly infection. A sad one-off. But they would still monitor me for changes in the cervix, and only put in a stitch if absolutely necessary. They were definitely not keen on a preemptive stitch due to known side effects - miscarriage and chance of infection.

I had wanted one all the same. Having been exposed once was enough, and I would take the risk. However I was satisfied after I adjusted to the change in nuance - they key would be in the monitoring.

By by 15 weeks, to the obvious surprise of the doc, the cervix was showing signs of weakness. I was operated on at 16 weeks, and it had already started to open, labour was starting.

A very close call. And I can't yet use the past tense.

I am still in hospital now for monitoring, at 17 weeks. The fear is that the operation itself could cause premature labour, or introduce infection. This is so horribly familiar. But it is not the same, and for everybody's sanity I have to remember that.

Back to the recurrent miscarriages. While there is not much risk associated with d+c, three or more can give an increased risk of a weak cervix in 12% of cases. But the key to me has always been Pineapple's sudden appearance on the scene. I have long mused that although her birth seemed quick, that was just the part we were actually aware of. Labour may well have started earlier while we were having dinner with friends. Silently, painlessly.

So for you, and for this little one, labour also started silently and painlessly, but so sadly, too early in the gestation. Perhaps Pineapple's speedy birth further weakened the neck of the womb. Whatever - it IS possible to have a weak cervix and to have previously delivered at term, to all the experts apparent surprise.

It does not lessen the pain, but I feel strangely at peace that we know more of the story. Bizarrely that peace is even despite the current threat to this pregnancy. But that's what a pregnancy is like after a loss: one foot in the past, grieving and trying to understand, one foot tentatively daring to hope for something different.

In time I will also rage at the heavens and shout at the mountains that your loss was so meaningless. All because of elective surgery, following a suite of miscarriages which, in turn were just down to 'bad luck'.

How twisted is that? I cannot even begin to imagine what I am going to make of that, when I come off this cloud.

But I do not really believe in 'bad luck'.

Not to that degree. It should be recognised for what it is: a lack of complete knowledge and not enough research. No doubt in 100 years people will look back and wonder that we went through so much due to our technological ignorance.

In the meantime, though, I will still do the lottery.

Holding it all together # 1

One of Pineapple's teachers at the afterschool club took her father aside last week, wanting to know a bit more about her broad collection of imaginary friends.
'There is one, she has mentioned, a brother who has angel wings who flies about - is he real?'.

'Yes, he's real'.

'She said something about a baby dying in her mum's tummy, and she was crying'

The image of the angel is new, and is Pineapple's own.

We have been talking quietly these past few weeks, and she must have picked it up.

Pregnant again, we have decided to leave it for as long as possible before telling her. We have been attempting to protect her from too much further anxiety. As if we can stop her from seeing ours! With an enquiring little mind around of course, not saying anything can have other results.

It should be good news, thrilling news, but when you have had a stillborn child, the joy and excitement of pregnancy is stolen from you. It must be the same when you lose a sibling.

Pineapple has been at the afterschool club, because we have needed the extra time. It' s been so great to have it, and they are very flexible. Even better, she loves it and begs to go. A routine scan at 15 weeks has picked up that I risk going into early labour again. We have had hospital apointments, and now I am being admitted for a stitch, literally, to try and hold this pregnancy together.

Do you think Matt ever knew he had a sister?

“Do you think Matt ever knew he had a sister? A big sister, like me?“ Pineapple asked yesterday.

She is very excited and proud that in 16 days she will be five-and-a-half. Because her birthday is so close to Christmas we always thought we would make a little something of the halfway mark for her. This year, as her birthday fell around your due date, it was hard. We made sure she had a great time, but still, not an easy celebration. So the half year mark has perhaps become more important to me too. The countdown to the date has been fun.

“Well, I am sure he heard you. He would have known your voice.”

She seemed to like that idea, and smiled at the thought.

Hoshi, Sitara, Astra and Star. We gave these names (all meaning star) to the four other babies that were not born. They all were miscarried one after another when they were really tiny, even before Pineapple was born. We thought star was a great name for this foursome, as perhaps miscarried babies become stars. We called you Matt, by the way, as you were a complete gift to us, and you came and went, out of the blue.

Hoshi, Sitara, Astra, Star and Matt: if you can, please look after the little unborn one, 16 weeks tomorrow. And of course, please watch out for your sister Pineapple, who is now so nearly five-and-a-half. Sometimes I am amazed that she managed to be born at all – but so thankful.

Thank you Matt!

Matt,

today is my birthday, another beautiful blue sky day in the Alps. We have a good day planned. I miss you as ever, and think back to this time last year. It would just dawn on us in a couple of days time that you were coming along. What a cliche, but really, what a year!



And I have something else to tell you.

I believe you would have been generous and warm-hearted, from my dream of you, so can trust you to take this the right way in time: I am now carrying another little one. The pregnancy that is nurturing her is 14 weeks old.
When I found out about her at first, it felt good, peaceful, calm. It was as if a void had been filled, with what ought to be there. But I must apologise to both of you two, born and unborn: that feeling did not last long at all - and it seems as if I have spent every waking moment since grieving you Matt. Thinking of you, missing you.



Congratulations on the new pregnancy, although well meant, felt surreal. In anycase it was all so unfair on you. I am in good company apparently, as this is a predictable reaction in a subsequent pregnancy, according to every piece of research out there I have read. It is still an unexpected reaction until you think about it, so it is as well to be prepared for it: we may not have not seen the last of it. Its made me think about parents of twins where one sadly dies at birth: how to celebrate a birthday of a loved child, when you are grieving for the one you lost at the same time? It must be so hard, so conflicting. And all this, and she has not even remotely got to the point where she can be be born yet. We have still all got a lot to get through.



She? Well I don't know for sure, and I am quite happy to be wrong: all we can hope for is a safe arrival of whoever is on their way. But at this point I can remember so clearly how it felt to be carrying you, and this is very different. Or I should say, you were so very different, and at times it was a unique experience for me. I was changed by you. I benefited from having you.



I remember one incident, and you were also just 14 weeks. I remember how it felt as if it were yesterday - not because of what was going on but because of how differently I was reacting to a minor, petty difficulty.



I was in a new kid on the block at work, and a colleague was attempting to bully and manipulate me to pick up the pieces of a bad hand long-previously dealt: a large dose of known legacy problems, and who knows what other hidden skeletons in the closet. Just standard bad behaviour at work. I had an inkling it was a minefield from the urgency but not quite how far the unexploded bombs stretched, and the full explosive power. Clearly this person felt unfairly treated historically. (Most probably they had a case. I have good reason to suspect there was of unfairness, but that's very much for another time). In any case horsetrading with a disgruntled colleague just to keep the peace seemed futile, even if I did have to see them daily. You see, normally that alone would have influenced me. But for maybe the first time in my life, I felt the resolution of conflict to be incredibly simple. I refused calmly; reversed the question and asked why it would be for me to deal with? I could see there was a problem, but I too had my own job to get on with and needling me was not going to get me to agree to concessions I did not really understand. Without you, before you, I would have probably gone round the houses, tying myself in knots, trying to see it from their point of view, suggesting ways things could be changed, looking in vain for a hopeless compromise.



But I did not like the approach, and so, simply did not have to buy it.

It may be a complete load of rubbish, but I have read somewhere that at around weeks 14 of pregnancy, if it is a boy, then there can be surge of testosterone. If that's what it was, it certainly felt different; not dramatic just uncomplicated but powerful. I was fascinated by the easy assertiveness that came. Is that what it I would have been like as a male? Perhaps quite different then! A small incident but one that taught me so much. I no longer have that phantom supply of testosterone (or whatever it really was), but I do remember how easy it was to stand my ground coolly. Having felt it once I am sure it will be possible to recreate the mood if necessary.

So...on my birthday, I would like to thank you for this present, and what was a unique insight!

xx

Mummy, whats your job?

Today is a beautiful spring day in the Alps. Radiant raindrops on the trees in the valley, a dusting of snow on the hills just behind. Pineapple and I have just walked to school - and back home again. For some reason we missed that its May day, a bank holiday here and all is shut including school. Doh!

This is just fine! A chance just for the two of us to be spontaneous, as everyone else has also gone out with other plans. The boring but necessary tasks I had for myself also must be cancelled, as they all involved French functionaries. This holiday really is a little gift.

Pineapple teases me that she knew all along, and that I am silly. Silly, probably, and very far removed from the world of work. How else could you miss a bank holiday?

A few days ago she asked:

Mummy whats your job?, Pineapple asked.

'Well, its the same one as I had before. You remember - you came to the office on 'bring your kids to work day'.

That one'

'Oh….'

'Its just that since Matt died I have been feeling sad, so they have let me have a break, a rest'.

'Well, I am still sad too! she said emphatically. 'I am still really sad. He should be lying in his cot now, having a nap'.

Once again there was her empathy and strength of feeling: I waited for the request for time off school all the same, but it never came. So she has her day today.

As it happens looks like I am to be made redundant from that job. Probably very much for the best, but I was disappointed that that was the best solution that could be found. I had been seeing a return to work as a milestone that I had recovered enough to step back through the door: instead the conversations we have been having over the last month have thrown me right back to last September. For a while it has been as if all the intervening months and feeling-better-days have never been.

But beautiful days and the need to be spontaneous has reminded me of all the benefits of having nothing to do with them. There are other sides to it, but that’s the focus today.

"You forget how small they are"

This is a text I sent to a friend on April 1.

'Hiya - sorry to bother you but got to tell someone!
this is still so so tough. Really thought I was making good progress but now I wonder:
I was chatting happily to a mother today with her sweet little newborn (2 weeks).
Another mum comes out with the pat cliché –
"oh you forget how small they are, don't you!?".
A so normal - if boring - thing to say, but as I walked away I realised I would, could, never ever forget 'how small they are'. That's etched in my mind - the cliché had no meaning. Cried and cried.


You forget how small they are don't you? Well no, when you have had a stillborn baby, its something you can never forget.

It stays hardwired in your mind because you do not have the wondrous effect of daily development to overwrite the last memory.

I can remember Pineapple's eyelashes growing almost as I watched, when she was 3 weeks old. Everyday is something new and wonderful. That is life. Death stops everything, seals the moment.

When it’s a baby who has died, one thing you always will remember is how small they are, as that is all you have.

I am amazed that I could calmly and honestly admire the baby, but that this inconsequential comment - because of its wider context - was so very hard to bear.

‘Mummy, what would you do if you had a boy ?’

‘Mummy, what would you do if you had a boy ?’
Pineapple popped her head out of her bedroom door to wonder.
‘Well, I did have a boy….’
‘Who ?’
‘Matt’.
‘No, but he’s not really your child’ . The ‘child’ was emphasised, long and drawn out.
This was not as stark as it reads, and from her point view I knew just what she had meant.
‘oh, you mean, a jumping about, being cheeky, talking, joking, kind of boy ? I smiled.
‘yeah, like wearing a spiderman suit….but why did Matt die in your tummy ? wasn’t he healthy ?’
‘I don’t know why he died, the doctors tried to find out, but they never found an answer. He was healthy, but maybe he caught a very bad cold. We just don’t know I’m afraid.’
‘Sometimes babies can get germs from their mummies’ she told me gravely.
‘I know ! I have a book about it. Guillaume and I can find the answer for you’
She was on the case with Guillaume, her current best, invincible, invisible friend. She sat on the bed with a copy of ‘How your Body Works’ (Usborne – great book!).
‘here, lets look together and talk about it….’I suggested, assuming that’s what was required, and what she wanted.
‘No! no! NO! Guillaume and I know all about it. We can tell you everything, and get the answer ourselves’.
After a quite a 5-year-old-while of staring at illustrations of a baby growing, a mummy and daddy looking pleased, she declared :
‘I’ve got it ! that’s it ! I know what happened…….Matt got to here….and went backwards‘.
I went to have a look at the explanation. She pointed to a picture of a four month old baby in the womb. Her theory was that at that point he stopped and went into a kind of backward development, back to an egg.
Not bad. And so much better than the reality.
‘Actually he got to this point’ and I showed her another illustration, of the perfectly formed baby at five months.

*******

As ever there was so much in that little conversation…

These ideas come to me straight away – others will no doubt spot more.

The human need to have an answer ‘why’ to tragedies, and to not be able to accept no explanation. This is as strong in a 5 year old as anyone. Also, not for the first time, she showed the great extent of her overall understanding, which needs to be treated with respect.

The reality is that we had a baby boy, but not finally ‘a child’, as Pineapple defined it. Her thinking is in line with most peoples, but not those who have suffered a similar loss.This difference between being pregnant, giving birth, and having a child develop to get to the point they can, say, wear a spiderman outfit (that is what counts) is at the heart of much of babyloss grief.

So - our knowledge that we have had a son, will never quite tally with the way the outside world can ever hope to see it. To claim more verges on the unhealthy. We are left only with our grief. At the worst moments I have willed the grief, as unbearable as it is, to live on. Coaxing it, drawing it out, feeling it. At least there is something of him then. I know that six months after losing him I am still allowed to say that. 5 years on however I would be likened to a Miss Havisham figure. There is still a way to go. And I mean there is a journey here for me personally, but also for the wider world to start to appreciate the particular suffering caused by stillbirth and neonatal death.

The last few weeks or so have been intensely hard. One theme that has come up with force is the need to acknowledge Matt, not just in my head, but in daily life. Hence this writing, the memorial site and more things I am sure.

Thankfully I was able to be charmed by Pineapple’s thought process, and happy that we can talk about it naturally. But only because I have been thinking so hard about all this in recent weeks was it an uplifting, not crushing, conversation. Grief needs work sometimes to enable us to deal with the everyday.

Pineapple wanted to make me feel better with her theory. That’s great empathy, but this is not her job long term. However much the points above will hurt us at times, she should not have to suffer this any more than she has already.

Letter to Matt

To Matt
"Its probably nothing serious but, if it does not clear up, go to the delivery ward" The Midwife was calm and reassuring when I found a quiet place to call from work.
Two days later, watching a scan of kicking baby, one clearly very much alive –the words of the consultant made little sense.
"I am sorry - its very sad but its looking likely, well inevitable infact, that you are going to lose your baby. We will operate in the morning to do what we can but its is unlikely to work"
She was kind Matt, but she really wanted us to understand and to prepare ourselves that you were going to die. As if such preparation were really possible.
The operation did not work.
Yes you were still alive, and I in fact would still feel you moving and kicking over the next 5 agonising days; but it was explained, the birth process itself would probably kill you, and if not, you would not survive more than a minute or so on delivery. "Sometimes they give little gasps".
Over the next week or so your Dad and I made the hospital our home. We reminded ourselves we only had a few weeks to go and then you would stand a better chance of survival. We were encouraged by what we thought was the increasing surprise of the medical team, when they saw we were still there as the week wore on. Less and less I was asked if I wanted to induce labour "to get things over", more and more I had whispers of encouragement and, even, stories of the odd case like this that had made it to a live birth, months later. We were not daft Matt, we knew the chances were slim, but we wanted to know we had done all we could for you.
Matt, sometimes I wonder if you knew even before we did. The night before the call to the Midwife I had a vivid dream: I saw beautiful gossamer and diamonds, silk down and glistening, shimmering threads wafting peacefully. If I close my eyes I can see it all again: A baby's face clearly visible, and one hand pushing against a soft membrane, gently relaxing again. The handprint darkened as it pressed, lightened again as it released. The baby is at peace, smiling serenely, chuckling and giggling, now laughing loudly, moving upward and right towards a penetratingly bright light. Was that you letting me know you would be alright?
I do hope you were in no pain Matt, and that you were already laughing your way to that light long before your awful, complicated and lengthy birth started.
We spent the next few days with you; we took photos, took hand and foot prints – uncannily as in the dream; I made sketches and we dropped back to the hospital to see you as much as we could. You were beautiful and perfect, but so sadly just too small to survive.
I am playing Aretha Franklin "I say a little prayer for you" and one day, when I can, I will paint the picture of you in the dream, my beautiful little boy.
For now, here is a picture of O-Jizoo-sama from Japan. He is the guardian of children like you who have died before their parents. He’s holding a little baby like you. The baby is even wearing a bib. Its comforting that you, and all the babies like you, have a guardian like him.
It’s a half a year since your birth-and-death Matt but you are missed as much as if it was yesterday. We think about you and will love you always. We are so very sad that you have gone.
Sleep tight,
Love Mummy

Tetard is French for tadpole

At 4, Pineapple was given a 'merit certificate' in a school assembly for her 'wonderful description of the lifecycle of a frog'.


I was so happy for her, and loved the certificate, which is still pinned on a wall: this was sweet recognition. In retrospect, more than this maternal pride, I am comforted that she was already making a place to put a shocking understanding that was soon to be forced on her.


The award came out of from time spent that summer with Dad discovering tadpoles and frogspawn in a pond near our place. The pond has a small tributary into a glacial and turbulent river that wends its way to Geneva. Some of the frogspawn even hatched and made it to tadpoles. Some of them too managed to mature to frogs. One day I watched with a sickening feeling as the odd, ably swimming, tadpole found its way to the wrong part of the pond, and slipped into the fast-flowing but tiny trickle of water, that dropped into to this churning, icy, unforgiving river.


'Natural selection' her Dad and I reasoned at this pointless waste of a life. Secretly (but in vain I know) I imagined a little bower, or rock of safety somewhere downstream, from where the marooned tadpole would mature and become a glorious frog after all. I am not sure if Pineapple noticed the stricken tadpole, she was too busy poking others with sticks.


I was 16 weeks pregnant carrying you, and we were all looking forward to meeting you.A year later: We have moved out to France, and live close to the same tadpole pool. A new school, and a new life. But so sadly, not your life .


I am accompanying Pineapple's class on a school trip to visit the fire station. The trip ends with a walk in the woods, and an expedition to hunt tadpoles. The ground was drying up after a period of heavy storms, and before we had a chance even to reach the pond with frogspawn, some 5 year olds stumbled on some jelly-like stuff on the path.


'C'est quoi? ' "whassat?" They asked.


'Children, this is what we are looking for - this is frogspawn that’s been put in a puddle by a frog. But look - the puddle has dried up and the frogspawn is stranded. It will probably die…'


10 children looked around quickly for a solution: "lets get some water quick!"Surely we were not just going to let the frogspawn die?


I thought of you and put it another way, as best I could: 'I think it’s too late'.


The children bounced off in 20 different directions to splash in mud and other puddles, apparently reconciled to the inevitable.


But I overheard Pineapple muttering to herself, head down: "that’s just like what happened to my brother. He didn’t even get a chance to live either". She had been thinking of you too.



*******


This is typical of Pineapple these days. She talks about you when it is relevant or she is reminded of you. She plays happily with baby dolls, nurses them. (One is so similar in size to you that at first I found it unbearable to watch). The hospital gave us a crochet blanket similar to the one you were wrapped in, which she loves dearly, plays with and calls "her Mattie". She has a wide circle of imaginary friends, including a superhuman invincible brother.


We were told that children who heard the direct truth were better able to incorporate the loss into their lives, and deal with it as healthily as possible. But it was hard nonetheless. She went through a lot. She was only 4 and was devastated when she first heard you had died, just like everyone else.

It was hard for her too as she heard the initial consultation in the hospital:
'I am sorry, it’s very sad but it is most likely, inevitable actually, you are going to lose this baby'.

Pineapple suggested that if she sang songs it would make you better. She blamed herself for a while afterwards, for not singing enough, or well enough. But she also blamed me: when I came to pick her up after your birth-and-death, she met me on the stairs and screamed at me, angry and betrayed: "WHY are you not pregnant any more? Tell me NOW, WHY??"

She does not ask ‘Why?’ so frequently now, she does not blame any more, but like us all she has not stopped wondering, poor thing!