An Emotional Week

It’s been an emotional week. Positive emotions, as well as sad ones.

Last week Martin and I travelled down to Devon and Cornwall to meet family, and friends we’d met on Twitter. Thankfully, none of the latter turned out to be axe murderers.

We had a lovely couple of days with my Mum. During that time, we also met up with two Twitter friends and their dogs on Westward Ho beach. It was blinking freezing, but good fun and wonderful to meet the two lovely ladies and their dogs in person.

Martin is a pet photographer, and got some fabulous photos of the dogs.

The next stop was Mullion, a small village on the Lizard Peninsula for the opening of our Twitter friend’s second-hand bookshop, Churchtown Books. We had met on our previous visit to Cornwall last autumn.  A number of other Twitter friends attended for the opening too. This group of Twitter buddies is amazing: we have a diverse range of backgrounds, ages, and we live in different areas of the country. We have got to know each other through a shared love of dogs (English Springer Spaniels in particular). All hail the magic of social media!

The shop opening went really well, attended by guests of both the two- and four-legged variety. Being a bookworm, I bought a stash of paperbacks, as well as a special antique copy of Jane Eyre.

The bookshop opening: instead of cutting a ribbon, the dogs bit through a row of sausages.

The bookshop opening: instead of cutting a ribbon, the dogs bit through a row of sausages.

Me and Harry the spaniel.

Me and Harry the spaniel.

We stayed in a room in the local pub, which dates from the sixteenth century. We had a gorgeous huge room with lovely views, but being a pub it was inevitably rather noisy on the Friday and Saturday nights.

View from our room in Mullion

View from our room in Mullion

Martin and I were keen to try and see a sunset over the sea. Our friend was kind enough to take us out and shiver with us while we waited. The cold was worth it: the sunset was absolutely spectacular.

The clouds above the setting sun were alive with pinks and reds, at some points looking though they were on fire. Rays peeked through the clouds. As the sun sank further, it became a glorious orange colour and seemed like molten lava melting in to the sea.

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Our friend says he has seen many sunsets during his time in Cornwall, but none quite like that one. Martin and I like to think of Hugo playing beyond the clouds, up among the stars. For that reason, such a beautiful sunset made us both feel emotional with the thought that Hugo had helped put on such a show especially for his Mummy and Daddy who were watching.

Mullion Harbour

Mullion Harbour

Martin and I in Mullion.

Martin and I in Mullion.

After a lovely few days spending time with wonderful people, Martin and I had a couple of quiet days to ourselves. We left Mullion and travelled to Looe.

The view from our room in Looe.

The view from our room in Looe.

The B&B Martin had found, Schooner Point, was beautiful and the best I have stayed in. We had a huge room with such a pretty view of the river estuary. A bonus was the room was decorated in purple! Nothing was too much trouble for the hosts, who served us tea and cake on arrival. The room was equipped with lovely little touches like slippers, robes, and chocolates. They also served the best breakfasts – while Martin had the full English, I thoroughly enjoyed the banana stack – a delicious pancake and fruit concoction.

The delicious banana stack.

The delicious banana stack.

Our arrival in Looe coincided with Mother’s Day. Exploring the town, we discovered the beach which of course was full of families celebrating the day. They all looked so bloody happy and content doing just normal, simple family activities at the seaside. It all felt too much, and I had a cry. Writing about it helped a little, releasing those emotions is good therapy. The messages I received from so many people on social media and by text were also a comfort – remembering that I am a mother still, even though Hugo is not in my arms. A couple of the messages, saying they hope I remember how much Hugo loved me made me especially emotional. While I understand what happened is not my fault, Mummy guilt is still present, so being reassured that Hugo did love me means so much.

A view from the cliffwalk from Looe to Polperro.

A view from the cliffwalk from Looe to Polperro.

The next day Martin and I went on an epic cliffside walk to Polperro. The distance is about 5 1/2 miles, but as it was up and down steep paths was hard work! It is a beautiful path, though, and completely worth the effort. Polperro is stunning. Looe is pretty, but a bit too touristy for my taste, whereas Polperro is more organic with its harbour and quaint winding streets. Before we set off on our walk we thought we might walk back too, but we were so tired we got the bus.

Polperro

Polperro

A sweaty and tired Leigh and Martin arrive at Polperro.

A sweaty and tired Leigh and Martin arrive at Polperro.

Polperro - the name of the boat, and yellow flowers inevitably reminded me of Hugo.

Polperro – the name of the boat, and yellow flowers inevitably reminded me of Hugo.

We faced the epic drive home the following day, broken by lunch with Martin’s dad and stepmum in Devon.

We are now facing the anniversary of the most emotional, joyful, and sorrowful week of our lives. The first anniversary of being told Hugo was unlikely to survive was on Thursday. I cannot help every day but think of what we were doing on this day last year. On this day last year, we were actually full of hope because the steroid treatment appeared to be working for Hugo; after only 36 hours, his pressures and oxygen needs had improved dramatically. Sadly, that improvement was not sustained and a year ago this coming Friday (March 27) Hugo died in my arms.

It’s awful, wrenching, devastating to think about the events of the last week of Hugo’s life, even a year on. Every day brings different emotions.

The Reading Residence

Rollercoaster Reflections

The experience of having a baby in a neonatal unit is often described as a ‘rollercoaster’. I understand why: ‘rollercoaster’ outlines the ups and downs, the twists and turns, the fear and exhilaration of a baby’s and their parents’ journey. A pretty succinct description.

While it is an apt description, I have never liked the ‘rollercoaster’ term. To me, it implies something fun. Something undertaken voluntarily. An activity that creates adrenaline, the fear is forgotten. Once the rollercoaster has finished, you might be so exhilarated you exclaim ‘again, again!’.

The neonatal experience is not fun, nor was it undertaken voluntarily, and I am in no hurry to repeat it.

I am reflecting on rollercoasters today because it is the first anniversary of the day we were told that Hugo was unlikely to survive. Every day since Hugo had been born four weeks earlier was full of joy, happiness, worry and anxiety – but we were not at all prepared for that news, or the subsequent days (I don’t think it is possible to be prepared).

A year ago today, Hugo’s nurse told us the consultant wanted to see us at a certain time. That time was around the same point I would be expressing my breast milk, so I shifted my timings and hurried back to the nursery. He and Martin were sat next to Hugo’s incubator. I walked in with a smile, which quickly vanished when I saw the look on Martin’s face.

Martin had already been told the consultant’s news: that morning, while we had popped out for a break Hugo had started to regularly desaturate, and to a worryingly low level. While he had subsequently recovered, the consultant explained that one day Hugo might one day desaturate and not come back. No one could say when that could happen.

Hugo holding Daddy's finger, on the day we were given the news.

Hugo holding Daddy’s finger, on the day we were given the news.

Ultimately, he explained, babies with similar issues do not survive. This explanation was given softly, kindly, compassionately. He repeatedly said how sorry he was.

He advised that steroids could be tried to help Hugo’s lungs develop, but they don’t work on all babies. The steroids had potential side-effects that could make other functions worse.

I remember sitting in shock. Yes, we knew that Hugo was very ill, and with an uncertain outcome. But I didn’t want to admit that to myself, and Hugo Boss was so very strong and feisty I thought (hoped) he just needed time to grow bigger and stronger.

I was terrified that Hugo might have a final desaturation when I was not there, that I would not be with him to comfort him.

The consultant left, and I sobbed over Hugo’s incubator. The nurse hugged me and told me how sorry she was, too.

Hugo hated being handled, meaning we had not yet had a cuddle. In the aftermath of that news, we were told we could have a skin-to-skin cuddle that afternoon. It might be our first and only chance.

I went to the toilet to get myself ready (I needed to whip off my bra etc). I was still so shaken by the news and wracked by sobs, but wanted to make the most of my cuddle with Hugo and try not to cry. Furious, I got my anguish out the quick way, by kicking the toilet wall several times. Fortunately, I was wearing boots, otherwise I would have had broken toes to add to my list of woes.

Hugo cuddles Daddy

Hugo cuddles Daddy

The video footage we shot on our mobile phones clearly shows our raw emotions. Getting Hugo (a baby who weighed no more than a tin of baked beans) out of his incubator was quite a process, involving three nurses because of all the wires. When he is lifted out you can see exactly how tiny he was, in perspective to the adults around him.

Hugo settled quickly on the skin between my boobs. It was absolutely incredible. Exhilarating, wonderful, amazing and all other similar words you can think of. For four weeks I had made do with comfort holds, and with Hugo gripping my finger.

Getting Hugo out of his incubator was hard work - but worth it!

Getting Hugo out of his incubator was hard work – but worth it!

Now, I could feel his soft, warm skin against mine. I could smell him. I could feel his little hands tracing my skin, and feel his feet kicking me. I could feel him boogy as I sang to him. I could hear the little sucking noises he made.

I sang to him, told him how much I loved him, and told him all sorts of other things too.

Despite the devastating news I had heard just an hour or so earlier, I felt on top of the world. In fact, the rest of the world ceased to exist. It was me and my baby (and Daddy, too).

Knowing it was possibly the first and last cuddle, I wanted to drink up every single moment. I didn’t want to let Hugo go, but Daddy needed a turn too. Watching Hugo snuggle into Martin’s chest, and the look on Martin’s face was equally wonderful.

Leaving the unit later, I felt like I had won the lottery. The flood of hormones and emotions relating to the precious mummy and baby moment overrode my sense of sorrow.

For a while.

Once those hormones had worn off, the reality hit. I sobbed and screamed in despair, sorrow, fear and frustration.

Both Martin and I spent a lot of time with Hugo that evening, so scared of losing him.

Mummy, Daddy, Hugo

Mummy, Daddy, Hugo

Hugo held on, and the next morning it was agreed to start the course of steroids.

The previous day had been a rollercoaster of emotions. As the week progressed, it turned out that rollercoaster was one from a small funfair. The biggest rollercoaster, like all the scary ones from Alton Towers put into one, was to come.

At first, the steroids seemed to be working brilliantly. We hoped they were working. We might take our boy home! The scary rollercoaster journey was all worth it.

Then they stopped working.

The second cuddle with Hugo - you can see how eager I was for that cuddle!

The second cuddle with Hugo – you can see how eager I was for that cuddle!

Out of the five weeks Hugo lived, the last was by far the most wonderful because of all the cuddles we enjoyed. It was also the worst because of hopes raised, hopes dashed, awful decisions made.

Like the rollercoaster at Alton Towers that disappears vertically into the abyss. But doesn’t raise you up again.

It sometimes felt like a pretty effective form of torture.

What I try to remember from that week is those amazing cuddles. Watching Hugo’s face in a mirror, him opening his eyes. Such simple pleasures.

Memories no one can take away from me.

I love you, Hugo, and miss you so much.

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For Your Consideration: Brilliance in Blogging Awards 2015

Nominations are open for one of the most prestigious blogging prizes – the Brilliance in Blogging Awards (or BiBs, for short).

Organised by BritMums, a major parenting blogging network, the awards celebrate the best bloggers in 12 categories.

Asking to be nominated feels a little awkward. A year ago today, I was in a very different place – physically and emotionally. I had never heard of BritMums, or the BiBs. I dearly wish that I was not sitting here today typing this, and that you, dear readers, had never heard of me or of Hugo.

But you have heard of me and of Hugo. That is because Hugo died. I took to my blog to express my grief, and to raise awareness of HELLP syndrome, the rare pregnancy illness that nearly took my life and was the cause of Hugo’s very premature birth. I set up Hugo’s Legacy (#HugosLegacy on Twitter), to raise awareness of HELLP, birth trauma, premature babies, baby loss, and improved support for those experiencing these things.

The things that Hugo’s Legacy has achieved in less than a year (I wrote my first Hugo-related post at the end of April 2014) have exceeded my wildest expectations. Readers have got in touch to say they now feel better able to be sensitive towards those who have lost a baby (or suffered a bereavement in general); more people have now heard of HELLP syndrome, and know what the symptoms of that illness and its close relation pre-eclampsia are; health care professionals have said they have reflected on and changed their practise as a result of reading my posts.

There are so many wonderful blogs and bloggers out there, making choosing who to nominate a challenge (I’m having trouble narrowing down my choices!) I hope you will consider nominating my blog – I’m not in it for the plaudits, but being nominated for a BiB would be another achievement for Hugo’s Legacy. Plus, I would be lying if I said I wouldn’t be incredibly chuffed and proud.

Nominations are made via this form.

There are two categories you could consider nominating me for.

The first is Inspire“The content, the voice, the infectious enthusiasm of these bloggers encourages everyone around them. They are seen as leaders in their field and their inspiration is felt through the community.” My blog seeks to inspire change, and my readers have told me I am inspiring (which is very kind indeed).

The nomination form asks for a sample post. Some posts you may like to consider include When #HugosLegacy Trended; HELLP Raise Awareness; Five Reasons Why ALL Preemies are Completely InspiringCreating Precious Memories: Baby Bereavement Photography; An Open Letter to the Neonatal Unit Staff Who Cared for Hugo; Start a Conversation About Baby Loss.

The other category is Writer“Most blogs have writing at their core. But some blogs feature writing that makes it hard to stop laughing and reading. Whether a blog reads like a compelling bestseller or gorgeous poetry, this award celebrates the words on the page.” Due to the challenging subject matter of many of my posts I am sometimes surprised that people do read them, and find beauty in my writing.

Again, the form asks for a sample post. My writing is diverse, including poetry and prose, as well as awareness-raising articles. Some posts for your consideration include: For the Babies Who Didn’t Make It Home; The Option for Compassionate End-of-Life Care; Giving My 18 Year Old Self A Good Talking To; Do Good Things Come to Those Who Wait?; A World Gone Up in Smoke; The Letter from the War that Shattered the Peace.

A couple of other bits of information the form asks for are the nominee’s Twitter handle (@leighakendall) and email address: headspace-perspective@outlook.com.

Nominations are open until midnight on April 12, 2015. Ten from each category are then chosen for the shortlist, announced on April 28. The community then votes for their favourites; the finalists are then revealed, and the winners revealed at the ceremony on June 19.

Thank you for all your support for everything during the past year.

 BritMums

BritMums

Recovering from HELLP Syndrome: My Postnatal Inpatient Experience

I had finally met my son Hugo, born 16 weeks early because I had HELLP syndrome.

A bed in the maternity high dependency unit had been finally found. I reluctantly left my precious little Hugo to be taken to my new bed. Thankfully, the ward is adjacent to the NNU.

There was a small welcoming committee waiting for me, including an obstetric consultant and midwife. We discussed my stay in intensive care, and the unacceptable delays in bringing me to see Hugo. The discussion was heated, emotions heightened, tempers frayed from the events of the past few hours, piled on to the trauma of the week.

I was informed of the official complaints process. Caring for a critically ill baby and recovering from major surgery myself meant following official complaints processes was unappealing, to say the least. I did not have the time or emotional energy to expend on writing letters. It was agreed the intensive care matron would visit me after the weekend, which she did. Sadly an official complaint letter still needed to be written because they just did not understand how I felt, and eventually I had a meeting with senior staff on that ward to help them understand. Unacceptable, and a topic for another blog.

The midwife caring for me was wonderful. Kind, calm and reassuring. She and Martin hand-expressed my colostrum for Hugo. A couple of times they had competitions to see who could express the most (the midwife won, the benefit of years of experience). I was unable to help – my hands had swollen so much I had lost the ability to grip anything.

Most of the night was spent staring at the clock on the wall opposite my bed, watching the hands go around. When she came in to do my observations the midwife told me to try and get some sleep. I must have had some catnaps at some point, but my brain was unable to rest. My head was racing with the intense love I felt for my new baby son, amazement and relief that he was alive, sadness that we were separated, anger at being kept from seeing him for all those hours, and bewilderment at everything that had happened that week. Far too much to take in.

The next morning, an anaesthetist arrives to remove my central line. I no longer need a cocktail of drugs to be administered through it. I had become quite fond of my central line; with the range of coloured tubes dangling from it, it was almost like a fashion accessory. I was left with a couple of tiny scars on my neck from the stitches that had held it in place. They healed quickly, and in the meantime I looked as if I had been nibbled by a vampire.

Me with my central line.

Me with my central line.

Next was the removal of my catheter. I had to record my fluid intake, and pee in to a bedpan so the midwife could monitor the output. Eventually, I was able to record it myself. Luckily the room was ensuite, meaning I didn’t have far to waddle to the loo. The sensation of a full bladder – and recognising it as such amongst the pain and discomfort of my C-section wound – especially after having a catheter for six days took a bit of getting used to. Over the coming days, I learned to empty my bladder regularly rather than wait for the full feeling, which could hurt.

Mercifully, I was able to have my first proper shower in nearly a week. I had as much of a shower as I could four days earlier (without getting anything too wet!), and a bed wash on my first day in intensive care. While it was the least of my worries, I was aware I smelled. Being able to wash my body and my hair felt wonderful. I couldn’t move very much, so Martin handed me all bottles I needed. I was scared of doing something to my wound, but just patted it dry.

Even better – after my shower, I was finally able to wear my own pyjamas. A glamorous standard-issue bottom-baring gown had been my attire since I was admitted. Feeling clean, and in my own clothes I was starting to feel like me again. The only problem was my body was still so swollen none of my knickers fit. My friend bought some emergency granny knickers for me – I am never, ever revealing their size!

I was able to visit Hugo, and under calmer circumstances. He was doing as well as could be expected, though I knew nothing at that stage was certain. I savoured every single moment with him, trying to take him all in, and taking photos and videos.

It was during that weekend we had ‘the chat’ with the consultant on duty. He told us that due to his size and prematurity, Hugo was still very sick. We could expect to be in hospital with him for at least 16 weeks – the time he was supposed to have arrived. We were told about some of the things – complications and the like – we could expect to happen. Considering before Hugo was born we had been told to prepare for the worst, I chose to believe the consultant was again giving us the worst-case scenario. Hugo was strong, and feisty, and we had to keep him free from infection until he grew bigger and was able to come home in the summer.

The following day, I was assessed as being well enough to go to the regular post-natal ward. I was relieved to have my own room, although I could still hear babies, and see proud parents going home with their new bundles. I tried to think ahead to taking Hugo home.

The first photo I took of Hugo.

The first photo I took of Hugo.

Martin, who had been sleeping on a mattress on the floor of my high dependency room, was equally relieved to now be able to sleep in a proper bed. We were fortunate to have a room in the Ronald McDonald House on site for as long we needed it.

The greatest nuisance about the post-natal ward is that it was several floors and a couple of corridors away from the NNU. I was still unable to walk, meaning Martin had to wheel me there and back. The lifts were infernally slow, too.

There were a couple of occasions where I would be all ready to visit Hugo, and a midwife would ask me to wait as the doctor needed to see me, and they would be with me ‘in a minute’. That is a turn of phrase of course, but the doctor took quite a while to arrive. Martin would wait with me, and the delay meant we were unable to see Hugo because the NNU’s round had started. Missing precious time with a critically-ill baby because of simple communication issues is unforgivable. Eventually, I would go to see Hugo anyway – sometimes I was called back, while other times I missed meds. The needs of neonatal mums on post-natal wards need to be better considered.

My visits to Hugo were supposed to be brief, because I was still recovering. I wanted to spend all the time with Hugo that I could – my own health was secondary to me. One evening my body took control, making me faint, shake, and a racing heart. Poor Martin got another fright. An ECG revealed there wasn’t a problem – I just needed to rest more.

Family and friends sent congratulations messages and lovely presents for Hugo. I was so grateful for all that kindness – not only did it help us feel not alone so far from home, it also helped me revel in the excitement of being a proud new mum, which was especially important in amongst the strangeness and the trauma.

Me on the postnatal ward, still horribly swollen.

Me on the postnatal ward, still horribly swollen.

Doctors from all sorts of specialties came to see me on the postnatal ward. A special case, I suppose. I don’t remember much of what I was told, and I remember asking the same questions repeatedly. I was able to retain little information. A kind anaesthetist arranged for a physiotherapist to visit me to look at my hands: even when the swelling had subsided, I was unable to grip. I couldn’t hold a pen, cutlery or toothbrush properly, meaning I had to rely on others to help me – I hated being so helpless. It was assumed the swelling had affected my tendons, and I was given some exercises to help the normal function to return, which it did after a couple of weeks.

I was on lots of medication – tablets for my blood pressure, iron tablets, painkillers, and ranitidine. The latter is for heartburn. I remember the midwives asking if I still needed the ranitidine, and being adamant that I did – I reasoned it was keeping that awful pain away. I did not realise that the awful pain had gone because Hugo had been born, and the worst of the illness had gone.

Daily blood thinning injections were also given. I learned to do it myself, because I would need them for several weeks after discharge. The midwives were good tutors, and as long as I got the angle right and didn’t dither, the injection wasn’t that bad.

Hugo was sent some lovely presents.

Hugo was sent some lovely presents.

Expressing my breast milk for Hugo meant that I was very conscious of all the medicines I was taking, even though they were all approved as being fine. For several days the midwives had been encouraging me to try Tramadol, not only because it would help with the pain, but it would also help me relax. I gave it a go – and found out what I had been missing. Tramadol is AWESOME! I remember giggling over nothing after my first dose, and blissfully sleeping for hours. It was much-needed.

My first photo with Hugo - taken on March 3.

My first photo with Hugo – taken on March 3.

By the Tuesday, I was assessed as being fit for discharge. Martin didn’t agree, as I was still weak. I was unable to hold a conversation, and the room would frequently spin, like it does when you have had one too many glass of wine.

I completed my friends and family test, and while I was waiting for my meds went to take a shower. The shower and loos are down the corridor. I built up my mobility and helped reduce my swelling by walking (waddling) there and back. My body again told me I was doing too much by making the world all blurry, my legs weak. I used my last ounce of energy to stand against the wall while awaiting rescue. After that episode, my hospital stay was extended, and I had to be wheeled to the loo and shower. Annoying.

The midwives would check I was already awake and expressing my breast milk to do my nightly obs, to save waking me up again. That helped me get a bit more rest.

It was agreed I needed a blood transfusion, as my symptoms indicated my body was not naturally replenishing the blood I had lost when Hugo was born. That would mean another cannula, which after the palaver of the previous week I was not looking forward to. Mercifully, an anaesthetist inserted one in my left hand, first time. I was given two units of blood, and started to feel so much better soon after. Colour returned to my cheeks, and I had more energy.

There was a little bit of panic when my platelets went from being dangerously low to very high. My logic was that if low platelets meant I was at risk of bleeding to death, surely a high level of platelets meant clots. I was paranoid, convinced every twitch in my leg meant a thrombosis. Being more mobile and my muscles getting used to functioning again caused the twitches, but considering the extraordinary and unexpected had already happened, I worried about what could be next.

After so long in hospital, I was desperate to be discharged. I wanted to be free to see Hugo whenever I was able. I wanted to go outside, to see the area we would be staying in. All I had seen of the hospital and locality was what I could see out of the window – it was quite disorientating.

I was also desperate for a decent meal. The hospital food is revolting, and I gave up on the evening meals because they would be left on a tray while I was on the unit with Hugo. I craved tasty, healthy food for my own recovery and so good nutrients could be passed to Hugo through my breast milk. Thank goodness for the M&S in the hospital reception for endless supplies of their salad bowls, and fruit yogurt.

Hugo holding my finger.

Hugo holding my finger.

And so, after two weeks in hospital I was finally discharged – a year ago today. There was a bit of unhelpful confusion about where I would get my postnatal checks (the options included seeing my own GP two hours away, or going through the palaver of registering with a local GP – either option was unrealistic).

Once that was resolved (I would see the community midwife at the hospital) and my huge bag of meds was prepared I was ready for Ronald McDonald House, and the next stage of our journey with Hugo.

When #HugosLegacy Trended

Thanks to many wonderful people on social media, #HugosLegacy trended last Friday.

I had asked people to help get the hashtag trending in recognition of Hugo’s first birthday. While I had hoped people would get involved, the number of people who tweeted for Hugo surpassed my expectations.

Individuals and organisations alike started off the day by encouraging others to get involved (with just a very small sample of the tweets):

People explained why Hugo’s Legacy matters:

Apparently my tweets alone on Friday had a reach of 786,000. Thinking of how many people now know of Hugos Legacy from my and everyone else’s tweets is extraordinary. Seeing the number of tweets and retweets marked #HugosLegacy really was a sight to behold.

There were so many tweets coming through, it became difficult to keep up with them all.

#HugosLegacy was for a time trending higher than EastEnders with their big ‘whodunnit’ murder storyline.

Only Cadbury’s was above us (but that was sponsored which is cheating). #HugosLegacy continued to trend in to the evening.

 

 

I have on several previous occasions described myself as ‘humbled’ by the support Hugo’s Legacy has received. Humbled seems an understatement for describing Friday.

Baby loss remains a taboo, yet people took time out of their day to tweet about it. Thanks to the efforts of everyone who got involved, on Friday Twitter was alight with issues that too often are in the shadows: baby loss, birth trauma, prematurity, life in a neonatal unit. In addition, more people are now aware of HELLP syndrome and pre-eclampsia. Hopefully lives will be saved.

This is what Hugo’s Legacy is all about. Hopefully now the messages can be disseminated even further.

Friday was a beautiful example of how wonderful social media can be.

Nothing will make the loss of Hugo any easier to bear. However, the love that people have for my super champion boy Hugo, and the support so many people offer Martin and I provides a small comfort.

Keeping Hugo’s memory alive through raising awareness of these vital issues is an incredible legacy for a tiny boy whose time on Earth was far too brief.

Hugo’s First Birthday, Survived

Hugo’s first birthday, one of the most difficult ‘firsts’ has come and gone. It was not a date I was looking forward to. But I have survived.

Really, my survival was not in doubt. Hugo’s first birthday could never be as bad as the day he died, or as bad as the day of his funeral. As with many such things, the anticipation was possibly worse than the day itself.

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A friend whose son died last year in similar circumstances to Hugo messaged me to say that she found her son’s first birthday no better or no worse than any other day since he died. While she was sad that her son could not be there to celebrate his birthday with them, it didn’t make the pain any worse than it already was. That neatly sums up how the day felt for me.

The dread started on the previous evening. I could not help but remember that was the last night I was pregnant. I was haunted by the thought that the pain in my chest was actually my liver in trouble, and that I had cheerfully responded with a “Yes, whatever,” to the midwives’ insistence that I tell them immediately if I developed a headache or flashing lights in my vision. I had no idea at the time exactly how seriously ill I was.

Reflecting on that night, and the following morning when Hugo was born is terrifying.

Hugo’s birthday started on a sombre note. I had been troubled by nightmares, and both Martin and I had a cry. We were both thinking how different that day should have been.

We were provided with much comfort by kind friends – both real-life and people whom we have got to know online. We were sent messages from people saying they were thinking of us and of Hugo. Some sent resonant song lyrics, and symbolic pictures. All these were sent as an expression of love for our little boy. It really did mean so much, and helped us through the day.

The week before Hugo’s birthday I had come up with a hair-brained idea to get #HugosLegacy trending on Twitter to mark the anniversary of his birth. In all honesty, I thought I might get a few people joining in and at best we might achieve a lower-ranking trend.

But – to my emotional astonishment – #HugosLegacy was for a time top trending!

This achievement is thanks mainly to a group of very special friends who took a lot of time to tweet, share on Facebook, write dedicated blog posts, and get in touch with all sorts of people to ask them to join in. You all know who you are – I’m not going to list you for fear of omitting someone – I am so very grateful.

Martin and I tweeted photos and little anecdotes about Hugo, while others tweeted my posts, and reasons why #HugosLegacy is important. It was like a virtual birthday party for my super champion boy. I was so very proud.

There were so many I was unable to keep up, and at times my laptop froze. I tried my best to respond to everyone and say thank you. There may be tweets that I missed – if so, I’m sorry. There is much more to this story, and I shall write a separate post.

We achieved the top trending rank at the same time as we reached our fundraising target. I was so overwhelmed, I took off my glasses, put my head in my hands and had a cry.

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The fundraising target (which I had doubled from our original target because it had been achieved so quickly) has been surpassed. So many people have been incredibly generous – thank you. The page is still open, and will be ongoing so more babies can be helped in Hugo’s memory.

The online activity celebrating Hugo’s arrival in the world, and the impact he has had on it exceeded my wildest expectations.

Martin and I visited Hugo’s garden. We took him some balloons and flowers. We sang ‘Happy Birthday’ – one of Hugo’s lovely nurses had messaged me that morning encouraging me to do so, imagining him boogying to it. That image helped put a smile on my face, although a sad one.

Hugo's garden.

Hugo’s garden.

We were spoilt with gifts for Hugo. The gifts are so wonderful they deserve a post of their own. All the gifts are symbolic of Hugo, and are very special indeed. Martin and I commissioned a special piece of artwork for Hugo, which is so beautiful.

The artwork we commissioned for Hugo.

The artwork we commissioned for Hugo.

The evening was spent in the company of good friends who helped us celebrate the arrival of our son.

We are now getting through the period from today until March 27, the day Hugo died. We are taking each day at a time.

Each day may bring its own challenges, but we know with the love and support of so many people, we will survive them.

Hugo’s Story

Hugo Christopher Dylan Parker was born at 11.19am on Thursday February 20, at St George’s Hospital, south London. He weighed just 420 grams.

Hugo showed us that size isn’t necessarily equal to fighting spirit, or determination to live.

I loved him from the moment I saw the line appear on the pregnancy test. Martin and I had been trying to conceive for more than two years. We had fallen pregnant on the first round of Clomid treatment, and couldn’t believe our luck.

The first view I got of Hugo was during a scan at seven weeks. He was a little bean, with a strongly beating heart.

Hugo's 12 week scan

Hugo’s 12 week scan

A true boy, Hugo showed his determined and cheeky character early on. He waved at us during his 12 week scan, and would barely stop wriggling long enough for the sonographer to do her observations.

We thought we might have to come back for another go at the 20 week scan, as he was stubbornly lying quite happily on his tummy, again presenting a challenge to the sonographer doing her observations. His tummy turned out to be his favourite position. Fortunately, he moved, and Martin and I were so proud to be expecting a perfect little boy. His growth and size were perfectly within the normal parameters for his gestation.

I knew I had an active baby, as I felt the first flutterings at around 16/17 weeks, which is early for a first-time mum. I loved feeling him moving around. He clearly liked his food, as he was most active after I’d eaten my dinner.

As the weeks progressed, he got bigger and stronger, and so did his kicks and punches. I remember him kicking and punching me throughout a work meeting; it was an amusing distraction to the colleagues who were giving me a bit of a hard time. It was as if he was saying “Stop being mean to my mummy!”.

Now we’d got through the 20 week scan, we started to buy adorable baby boy outfits, and plan to buy practical things like a pram. We got excited thinking about who our baby would look like, what he would be like and be interested in, and plan all the activities we would do with him, and things we would teach him.

Everything was going well. I was more than half way through my pregnancy, and so proud of my growing bump. I had assumed it was a matter of waiting for 40 weeks, and was looking forward to the further changes to my body those weeks would bring.

My routine 24 week community midwife appointment changed everything. I had been feeling unwell for a few days, and put it down to general pregnancy discomforts that would have to be endured. The midwife suspected I had pre-eclampsia, due to high blood pressure and high levels of protein in my urine.

I was sent to Bedford Hospital, where I was diagnosed with severe pre-eclampsia and HELLP syndrome, and told I was so sick I was likely to have to deliver him that night. Martin and I were devastated, as his chance of survival at that gestation were slim. I was given two steroid injections to help his lungs.

The doctors and midwives were excellent, and very kind. They did everything they could to keep my condition stable and Hugo safe.

Two days later, I was transferred to St George’s Hospital by emergency ambulance. It was the closest specialist hospital with both a bed for me, and a place in the neonatal unit for my unborn baby.

Shortly after arrival, a Doppler scan revealed problems with the placenta and that the baby was smaller than expected, by about two weeks. We were shocked, as the 20 week scan was faultless.

A further scan was arranged for a week’s time. We were slightly reassured by this as we hoped it meant he could stay inside me for a while longer to grow bigger and stronger, and therefore have the best-possible chance at surviving.

However, the next morning doctors arrived in my room en masse. They announced my condition had worsened and I would need to deliver my baby by emergency Caesarean section as soon as was possible, to prevent my organs failing. Without that, my life would be at risk and my baby would doubtless die anyway.

Hugo on the day he was born

Hugo on the day he was born

So, Hugo came into this world on February 20, 16 weeks early (24 weeks and four days’ gestation).

Martin and I didn’t know it was possible to love anyone so much.

I had to wait for about 30 hours to meet him after he was born because I was recovering in intensive care. Martin spent the day he was born walking between the neonatal unit and my intensive care bed, giving me updates on Hugo and showing me photos on his phone. I couldn’t wait to meet my baby.

On the evening we met, Hugo’s doctors and nurses were struggling to increase his declining blood pressure – which magically restored itself the moment I arrived at his incubator. The nurse caring for Hugo said she would never forget that moment.

Hugo, demonstrating his fighting spirit.

Hugo, demonstrating his fighting spirit.

His nurses were fond of him, nicknaming him ‘Hugo Boss’ not only for his early days reclining on a silk sheet to protect his tender skin, but for demanding to get what he wanted.

We dedicated our time to talking, singing, reading and gently holding Hugo while he was in his incubator. I loved watching him boogie away as I sang to him. This helped to not only soothe him, but to build up a precious bond within our little family that we will never forget, or lose. I felt very proud that he recognised my voice, and that my talking and singing to him were able to calm him when he was distressed.

A few moments before this photo was taken, Hugo had wriggled out of his armguard and chucked it to the other side of his incubator.

A few moments before this photo was taken, Hugo had wriggled out of his armguard and chucked it to the other side of his incubator.

Hugo was a perfect little boy. We loved admiring his exquisitely-formed finger- and toenails; praised him for his cleverness in opening his eyes to peek out at the world, and for getting cross when he had a wet nappy; wriggling out of an arm guard; using an arm guard to protect his eyes from the light; chuckling at him sticking out his tongue to defy the suction tube, and his head of dark hair.

We were so proud of Hugo when showing his courage, showing a fighting spirit that would put grown men to shame. He was determined to have things his way, whether it was sleeping in his favourite position on his tummy, waving around his ‘laser guns’, or kicking off an unwanted blanket.

Hugo loved to play with his wires.

Hugo loved to play with his wires.

Hugo was an active boy, and loved to wriggle. He would often grab his wires and tubes. His nurses would sometimes have to tie him into his nest to stop him wriggling around too much.

He was cheeky, and particularly enjoyed continuing to poo while I was changing his nappy. His nurses would spend a shift running around after him and turning off his alarms when he desaturated, which he did with worrying regularity.

Hugo loved my milk, and his body was growing bigger and stronger. I was proud that he tolerated my milk. He would get cross if his feed was late. All his milk would be guzzled up, making it difficult to get any aspirate to check the nasal gastric tube was in the right place.

Our cuddles with Hugo were times to treasure. Hugo was notorious for playing up when handled, but settled happily into blissful, calm, skin-to-skin cuddles with both his mummy and daddy. Hugo would trace my skin with his hand, kick me and boogie as I sang to him. He would also pull his dad’s chest hair. They were the best times, and I wanted them to last forever.

Being a long way from home, and with family and friends all over the world, we kept everyone updated about Hugo’s progress with regular posts on Facebook. Everyone loved hearing about his antics, and looked forward to hearing about what he had got up to. They rooted for him, and admired his strength, determination and fighting spirit, sending many messages of support.

Hugo’s life was full of many ups and downs. His first week was quite stable, but rounded off by needing to have a chest drain inserted because of a lung collapse. This was the first sign of his later lung trouble.

Hugo loved his milk

Hugo loved his milk

He was fortunate to avoid some of the problems that afflict premature babies, such as brain bleeds and digestive problems. However, he had a couple of threatened infections. The antibiotics affected his kidneys, and he suffered terrible fluid retention while his renal system struggled to cope. His poor little body was all swollen, and he looked so uncomfortable. He would then do several massive wees, which would sometimes go through his nappy and wet his nest, which understandably made him grumpy. He was on and off insulin, as his premature system learned to metabolise sugar.

A scan revealed he had a PDA (a valve on his heart was open), which we were not too worried about as it affects many premature babies.

He needed to be ventilated to help him breathe, but ironically the ventilator was also damaging his fragile lungs. His oxygen requirements increased, as did the pressures, to get the oxygen into his lungs. His liver was affected by the pressures, and could be seen as a dark shadow at the top of his abdomen. When the shadow first appeared the dreaded NEC was suspected, which led to a very anxious few hours until an ultrasound was done and a doctor confirmed those fears were unfounded.

A cuddle with Mummy

A cuddle with Mummy

The stress really started when we had a meeting with a consultant in the quiet room. We were informed that the team were worried about Hugo, who had by then developed chronic lung disease due to his reliance on the ventilator. Hugo was unable to produce surfactant, which made his lungs stiff and difficult to expand. His lungs were so damaged, they were similar to those belonging to an 80 year old. In addition, there were developing concerns for his kidney function. We were advised that there were other treatments that could be attempted to help his lungs develop and recover.

Hugo was put on to the oscillating form of ventilation, because this was gentler for the lungs. Sadly, it didn’t really help, and neither did the nitric oxide.

It felt so frustrating, as everything else seemed to be going well for Hugo – although, of course, we were aware that the lungs presented a significant problem.

Hugo really struggled throughout the following week. He regularly desaturated, and struggled to come back up again. We were informed by another consultant that his lungs were so damaged, he was unlikely ever to recover. He was on 100% oxygen, and the pressures were those an adult would be on. Martin and I were devastated. We loved Hugo so much, and weren’t ready to lose him. I was terrified that he would pass away without me being with him.

Those days really were mental torture.

Hugo sometimes did such a big wee, it went through to his nest, which had to be changed.

Hugo sometimes did such a big wee, it went through to his nest, which had to be changed.

On the following day, Hugo was started on a 10 day course of steroids. We were aware that these steroids were his last chance, and that they are ineffective on some babies. He would be started on a large dose for a few days, which would then be reduced as the days progressed. The ultimate aim was to reduce his pressures and oxygen requirement to a point where extubation was likely to be successful and he could be tried on the CPAP machine. His morphine was gradually reduced, because he needed to be without it by the time he was off the ventilator so he could be alert enough to make his lungs work by themselves.

We took a close interest in his blood gas tests. I hated seeing the heel pricks. Funnily enough, however, Hugo disliked the cold probe of the temperature test in his armpit more.

Hugo initially responded really well to the steroids. Within the first 36 hours, his oxygen requirements and pressures dramatically reduced. We dared to hope that the treatment might work for our boy, that his lungs would improve, he would grow bigger and stronger and that we would eventually be able to take him home.

We enjoyed our best cuddles during these days, and our bond grew ever stronger.

I desperately hoped the improvement would be sustained. I wanted Hugo’s success story to join the others in the corridor on the unit, and had already written his tale of triumph against adversity in my head. I so wanted to take Hugo to the graduates’ Christmas party. Mental plans were made to show Hugo off to all my family, friends and random strangers and bore them with the story of my amazing son.

Cuddling Daddy.

Cuddling Daddy.

However, when the steroid dose reduced, so did its effectiveness. His oxygen needs increased again, as did his pressures. We willed the pressures to reduce  so he could perhaps demonstrate a possibility of recovery if the steroid course was extended. We hoped he could be kept on the ventilator while he grew bigger and stronger. Anything to give him a better chance of survival.

On Thursday March 27, my world fell apart. We were advised that the consultants had recommended Hugo’s treatment be withdrawn. There was no chance that his lungs would ever recover. The rest of his body might grow, but his lungs would remain as they were. They advised that it would be cruel to keep Hugo alive, and on the ventilator. It would also be cruel for us to live in false hope.

During our cuddle that day,  I could hear Hugo’s lungs. They sounded raspy and bronchial, as though he had the lungs of an old man who had spent most of his life smoking. It was heartbreaking.

We had a long conversation with the consultants about what would happen. While it was a conversation we never wanted to have, and it was a decision no parent should have to have to think about, we felt very involved in all the discussions.

Hugo

Hugo

It was left to us to decide when it would happen. There was a strong temptation to wait, be selfish and keep him going so we could spend more time with him, and hope for a miracle. We were also aware that there was a chance that the decision could be taken out of our hands, as Hugo was very poorly.

Hugo himself made the decision for us later that same day. His pressures had increased again, and he was back on 100% oxygen. The morphine levels had also gone up. He was quite agitated, and was tugging at the ventilator tube.

We decided it was time, and his doctors agreed. The travel cot was prepared to take Hugo into a separate room, where we could have our final cuddles and spend time with our precious baby in privacy.

Martin had a skin-to-skin cuddle with Hugo first. I then cuddled Hugo, singing his favourite nursery rhymes and telling him how much I loved him, that he was the best baby any mummy could have wished for, and how proud I was of him for fighting so hard. I also told him those five weeks had been the best of my life, full of joy and happiness with my special champion boy.

After a while, his colour started to fade. The consultant came to check on him, and said his signs were fading. The end had come, and his breathing tube was removed.

We were left to be alone with Hugo. He died peacefully very soon after, still in my arms. Soon after, the consultant returned and at 5.54pm confirmed there was no heartbeat.

I was devastated, and in shock. Hugo had fought so hard for 35 days, and now it was all over. The baby and little boy I had so wanted and loved so much was gone.

We were again left alone and I cuddled Hugo for a while. It was strange but lovely to see his face properly without his hat, naso-gastric tube and ventilator tube.

The nurse returned; I helped change Hugo’s nappy, and wash and dress him. The little outfit was much too big for him, but he looked lovely. He was wrapped in a blanket with two small teddies tucked in either side. My baby looked so small and perfect.

Martin and I took turns to cuddle him. I took time stroking his face and hair, trying to take it all in. We took some photos. The nurse advised we were able to spend as long we liked together in the room.

News of Hugo’s death had spread, and nurses who had cared for him popped in to say farewell, and to give us hugs. It was heartening to see how much they clearly cared for Hugo, and were sorry his fight was over.

I was all too aware we had to leave at some point. At around 10pm we placed him in a Moses basket and returned to our room at Ronald McDonald House, where we sobbed for most of the night.

Hugo with his mummy and daddy

Hugo with his mummy and daddy

Amidst our heartbreak and devastation, Martin and I will be forever grateful for the opportunity to get to know and spend time with Hugo, and give him a chance at life. While we feel very unlucky that this happened to us, we know this makes us lucky in comparison to some other parents who have lost their babies.

We are also indebted to the neonatal team at St George’s. We know that Hugo was given outstanding care by the group of kind, compassionate, and committed staff. Hugo was given every possible treatment, and chance to fight for life. He was ultimately just too small, and premature.

More than 60 people attended Hugo’s funeral – not bad for a little man who lived for only 35 days. The number of people who took the time to help celebrate Hugo’s life demonstrates how deeply he touched everyone who followed his story. The messages of support and condolence reflect how much they admired his spirit.

Hugo’s name means ‘bright in mind and spirit’, and he certainly lived up to it.

Our friends and family made generous contributions to our chosen causes: St George’s neonatal charity First Touch, and Ronald McDonald House, Tooting. Hugo’s legacy will help other babies and families in need.

I also donated my left over breast milk, which Hugo enjoyed so much, to help other babies whose mothers are unable to express.

We miss him every day, but Hugo will live on in our hearts and our minds. He helped reinforce the importance of love, friendship and bonds.

Thank you for sharing the journey so far. Hugo has inspired me in many ways: to never give up, to fight for what I believe in, and to help others.

While this the end of Hugo’s journey in life, his legacy will continue through me: his very sad, but very proud, mummy.

Hugo's grave

Hugo’s grave

 

An Open Letter to a Recently-Bereaved Mother

Dear Broken-Hearted Mama,

I see you, numb.

Yet so full of pain. Pain that you cannot even begin to describe.

You may feel like the pain is unbearable, that the pain is going to crush you, that the pain is too much.

You may feel like your life has ended. That you do not want life to carry on.

I understand. I have been there.

My son Hugo died at the age of just 35 days. He had been born when I was 24 weeks’ pregnant, my first and so far only child.

Each one of those 35 days is so precious, but not enough.

No amount of time can ever be enough.

While your life has not ended; you continue to exist, your life as you knew it has ended. The end of innocence. The harsh realisation that bad things happen in life – and not just to other people.

Bad things happen to you, too. No one is immune.

We evolve during the course of our lives, of course. But grief changes you: suddenly, abruptly, shockingly.

Your relationships may change: some for the better, others for the worst. You are likely to discover that the old adage about seeing the best and worst of people during times of crisis is true.

Some people – even those previously closest to you – may not know how to deal with your changed relationship. The changed you. Most will want to do all they can to help you but because they do not know what to do for the best may blunder, put their foot in it, utter endless platitudes, and when tempers get frayed make you feel as though you are at fault.

The knowledge that the blunders are well-intentioned is unlikely to make you feel any better. It may feel like constant salt in the wound.

Me and Hugo enjoying a cuddle.

Me and Hugo enjoying a cuddle.

So much of your pain cannot be expressed in words. What you may want most of all is someone to sit with you as you cry or stare into space.  Someone to understand that you don’t know how to express your emotions. That sometimes, the power behind those emotions scares you. That you think the pain will never ever end.

But many people are uncomfortable with silence. People may want to talk at you, want to tell you about their own experiences of bereavement. Or they may want to tell you what they think you should do. They want to make you ‘better’, not realising life will never, ever be better. You may well sit their patiently waiting for them to shut up – but it is fine to ask them to stop talking, too.

People may not mention your child’s name, worried it may upset you but failing to appreciate that not mentioning them upsets you more – and after all, the worst has already happened.

People may not want to talk about your child with you, filling you with frustration. They were your beautiful, perfect child who you grew and love with every cell of your being, now and forever more. You want to talk about them, how proud you are of them, irrespective of the time you spent with them. This reticence from other people may lead to resentment.

It may lead to a feeling of isolation. A feeling that it may, as a consequence, be better to avoid certain people, certain places, certain situations not because you want to, but because you need to protect yourself from further hurt.

The knowledge that you are now ‘different’.

That is enough negativity for now. As I said, you will see the worst in people – and the best, too. The kindness of people can know no bounds. Compassion, empathy, the compulsion to reach out and help – the help you need, not what they think you need.

Those who will sit with you as you cry, as the cascade of tears fall, holding your hand and passing endless amounts of tissues..

And those people can often come from places you least expect; relationships can take on a new depth, friendships and acquaintances can be strengthened, new friendships forged often with strangers with whom you may now share a common experience.

Those who share the common experience, those who ‘get it’ are invaluable. It often does not matter if you have never met them, it does not matter if their child died in circumstances that are completely different – they understand. You may find you have a certain shorthand with them, and not having to explain is liberating.

You may feel the value of liberation: grief is exhausting. It seeps in to your pores, into your bones. The simplest of tasks can seem challenging; your memory unreliable, turning even the smallest thing that makes your life a tiny bit easier into a precious gem.

You may feel like you will never be happy again, never smile again. Indeed you may feel like you do not want to be happy again, nor smile again – or that you deserve to.

The feeling of guilt can feel all-encompassing. The knowledge that rationally, you know you have no reason to feel guilty – that you did everything you could, and would have done more, if only, what if – is irrelevant.

I still feel like I failed my child. I did not keep him safe. Even though I know, rationally, if he had not been born when he was we both would have died.

Emotional torment.

And the anger – oh, the anger. So raw, so visceral. Anger at the world in general, at the hand life has dealt you, at the world being so bloody unfair. Anger at those who embellish and become melodramatic over trivial everyday annoyances (no, spilling your coffee is not the worst thing ever.)

Anger at those who seem not to appreciate their children, take them for granted. But in the same breath, thinking you are glad that other people are blissfully unaware of such heartbreak.

More than a year on after Hugo died, I have learned to feel happy again. It is a different sort of happiness than before. A happiness borne out of different priorities and perspectives.

But that does not mean that I am better, or that my life is better. No, not by a long shot. I still get bad, low, devastating days as a result of a trigger, or of nothing at all. Those days can make me feel like I am back to the beginning, back to the darkest days, all my progress out of the window.

I have to remind myself I am not back at the beginning, that it is the fault of the path of grief. Grief does not progress in a straight, orderly line. It is a mass of intertwined squiggles that make no sense, with no end.

And that is part of the reality. Grief has no end. There is no better, only different.

You may discover within you a strength you wish had lain forever dormant. That strength comes from intense love, intense pain, and it can take on the world.

I am not going to tell you what to do, how to grieve. I cannot do those things, because while we may share a similar experience in common our individual journeys are so very personal.

But I would like to share with you a few points that have worked for me, take them or leave them as you will:

  • One day at a time.
  • Don’t expect too much of yourself.
  • Whatever is right for you, whenever is right for you.
  • Find people you can trust to confide in, or just to listen.
  • Be open and honest with your partner about your feelings, no matter how much it may cause extra tears – you need to be honest so you can support each other.
  • Find a way to express your grief – whether that is drawing, writing (on a blog or in a private journal), talking to someone, raising money for a charity.
  • Try to be gentle to yourself, and take time for self-care. Grief is exhausting, meaning you need to find ways to recharge your batteries.
  • Take time for your grief – ignoring it does not make it go away (as I discovered to my cost).
  • Being selfish when you need to be is acceptable – often life after loss is about personal survival.
  • There will be days when just getting out of bed is an achievement – and there will be days where you feel you can take on the world.
  • Bad days can come from nowhere.
  • You are not a bad person. You deserve love and happiness, even if it may take time to return, take a different form and be fleeting.
  • There is no ‘normal’, no better. Just different.

You will get there, Mama.

You can survive.

We are all here for you.

With love,

Hugo’s Mummy, Leigh xxx

Sunday Thought July 26, 2015: Two Perspectives, One Half of the Same Whole

At first for today’s Sunday Thought I was going to choose one or the other of the pictures below. Both appeared on my Facebook timeline this week, and summed up perfectly my feelings.

After a while, I realised I couldn’t choose between them because they are two halves of the same whole – so I chose both:

AngelaMillernew

For anyone who thinks that grief has a time limit, or that you ‘move on’ from the death of your child. There is a Hugo-shaped hole in my heart that will always remain. I feel the ache from that hole every day, I feel the pain of the void his absence has left in our lives. I feel the frustration when people don’t know what to say for the best, or do not mention Hugo.

But – oh, I feel such a proud rush of love when people do mention Hugo. When they admire him for the gorgeous, feisty baby he was. When they observe the work that has been done in his memory.

That is because Hugo’s Legacy comes from that pain, that void. As Angela Miller says, the love that oozes from it gives me the power to use my experiences to help others, to make others sit up and listen, to challenge.

To change the world.

MeganDevine

This is something I have difficulty with.

Since Hugo died I have discovered the very best of people: people I knew before, some I have met since. Such kindness, empathy, warmth.

Through my blog I have made the most beautiful friendships. Some are fellow loss mamas, others are not. We share in common a passion for sharing with others our feelings and experiences through words, a determination to give comfort to others, reassure them they are not alone.

Through social media I have made the most wonderful friendships. Professionals from all fields. Kind, compassionate, determined people willing to listen and take account. People willing to help me get involved, use my skills, collaborate to make a difference.

Through my blog and social media I have been given fantastic opportunities. Opportunities to get dressed up, have fun, be me; opportunities I never thought I would have.

Opportunities I never thought I would pursue, or do: speaking in front of large audiences, and with a clear voice too. The power of that love for Hugo gives me the strength.

Many beautiful moments.

All opportunities that came because Hugo died. Yes, these opportunities have come as a result of a lot of hard work, but the motivation for the effort comes back to the same reason.

Friendships, relationships, opportunities. But no son. No offence, but there are no prizes for guessing which I would prefer.

While I have a better sense of comfort with the opportunities I have been offered in the past year, I doubt it will ever sit well with me.

I would give it all back to be another mummy with the everyday trials and tribulations of caring for an energetic, willful 13 month old little boy. Who knows what our lives would have looked like in reality, but it would have been full of beautiful moments. Beautiful moments of a different sort. The wonderful moments of motherhood, the frustrating moments.

But what is done cannot be undone.

The way forward is to move forward. Reflect on the beautiful moments I had during those 35 precious days with my beautiful boy. Wish for more, so many more; no amount of time can ever be enough.

Hold on to those beautiful moments, and look to the future. Forging more wonderful friendships, generating more opportunities, creating more beautiful moments.

Hugo will always be a part of them.

The Origins of the Society

“At last”, he said. “We have been waiting for you for a long time.”

The woman felt a chill run through her. The events of the past few minutes had thrown her world upside down.

Recognising the woman was looking a bit perplexed, he offered her a cup of tea. Deciding the bookseller was eccentric but harmless – and hearing the torrent of rain continuing to lash down outside – she accepted.

Considering its age and fragility she thought it safest to leave it on the cash desk for the time being. She found a spare spot on the desk amongst the plethora of paperwork and books of every age, shape and size. With a sigh, she sat in a straight-backed chair upholstered in worn velvet that was placed next to the desk, and watched as the man shuffled back in to the dark alcove. The clink of cups and the rolling boil of the kettle prompted the dog to wander over to the woman, probably in the hope of a stray biscuit.

Books were everywhere, even stacked on the floor to relieve the overflowing shelves. She looked around her trying to find a place to set her wet umbrella where it wouldn’t get anything else similarly soaked and ended up stashing it under the chair, giving herself a mental note to remember to pick it up on her way out. The dampness of the weather outside added to the intensity of the mustiness in the bookshop.

Her handbag rested on her lap, and she reached in to retrieve her phone. A missed call, three texts, a few emails and social media notifications. She was about to open one of the apps to write about what had just happened but she paused, finger paused over the screen.

What would she write, and what was the point anyway? She had confided in only a couple of her closest friends when she joined the Society. Friends she knew she could trust, those who would not judge, pry, or ask too many questions. They knew she would give them updates, little snippets, when the time was right and she was ready to talk.

Everyone else? Well, they wouldn’t take it seriously, thinking she was just having a laugh, hence the secrecy.

With a frown, she locked the screen of her phone and popped it back in to her bag. Her hands tightly clenched the bag’s strap while her feet tapped up and down in a combination of excitement and nervous anxiety. The book – the book! – sat just a couple of feet away on the cash desk.

The dog nudged her for another fuss as the man reemerged with a tray bearing a tea pot, cups, a milk jug and a sugar bowl.

The crockery was old-fashioned bone china, delicate cups and saucers with a pink and green flowery print. Beautifully kept, with not a chip the china was clearly kept for best.

As he poured the tea, she leaned forward eagerly – but what to say, where to start? It would all come blurting out in a right old muddle – best to let the man start by saying what he knew.

A cup was set in front of her; the proffered milk was added, and sugar declined. “You might want some anyway,” he said. “You’ve had quite a shock.” After a moment’s hesitation she realised how light-headed she was and sweet, sugary tea always helped with that.

With shaking hands she picked up her tea; some of it spilled in to the saucer. Embarrassed about her lack of grace, especially during such a momentous occasion, she took a deep breath and told herself to get a grip.

With one hand on her tea cup and the other fussing the dog’s head, she watched as the man finally stopped fussing with the tea things and sat down on the other side of the desk.

The book sat between them. Both looked at it, cup of tea in hand.

Remembering the grunt of greeting she had received when she entered the shop, she realised she might have to start the conversation.

“I have been wanting to read about the origins of the Society for a long time. There are so few people involved in the Society, and not much is written down. There is so much hearsay, verbal history passed from member to member, so it is difficult to know what to believe.”

The man gave a barely perceptible nod, which she took as a prompt to continue

“I can’t believe I found the book here. I mean me! All these years, so many people looking for it, and I found it! Surely people must have looked? Most of the meetings are held in a place only down the road.”

Placing his cup back on his saucer with a gentle tap, the old bookseller gave a wry chuckle.

“That is because they think they know what they are looking for. You, by contrast, kept an open mind.”

“The book finds you.”

The events of this story happen directly after The Second Hand Bookshop.

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mumturnedmom

What Happened at the National Maternity Review Team Listening Event?

Yesterday was the first listening event of the National Maternity Review, held at London King’s College.

The invitation, from the Chair of the review herself, Baroness Julia Cumberledge promised that the event would “…be pooling ideas to improve maternity services.”

And that “We are most anxious to hear from all those who have an interest in maternity services; the public, users, commissioners, professionals, and organisations who would like to contribute to our initial thinking. We believe there is much that is exceptional, good, kind, and sensitive to the needs of women and their families. But we also know that there are services which could improve and some which are deeply disappointing with issues that need to be addressed. At this early stage in our work, we do not have any answers but wish to hear from you and your colleagues about your experiences, your thoughts, views and opinions and some possible solutions.”

I was invited because of my work with #HugosLegacy and #MatExp. Hugo was of course present via his handprint on my necklace:

And I was keen to share to promote the post What I Want the National Maternity Review Team to Know

How did the event perform against these objectives?

Overall, very well. The room was full of a range of interested parties including consultant obstetricians, midwives, members of the Royal Colleges of Midwives and Obstetricians; various NHS organisations, members of organisations that had been set up in response to personal tragedy (such as the MAMA Academy and the Campaign for Safer Births whom I was pleased to meet but did not have enough time to talk to).

Julia Cumberledge introduced the event by outlining the scope of the review, which is looking at the maternity experience from conception through to six weeks after birth. The timescale for the review raised a chuckle…

Workstreams include choice, continuity, diversity, professionalism, culture, accountability (mutual respect between professionals and teamwork), levers (triggers and incentives) – and barriers.

The comms plan for the review includes visiting centres across the country so as many voices as possible can be heard.

I loved the ethos for the event:

Be compassionate

Be a friend

Have fun

Assume it’s possible 

And so we began with the first round table discussion, looking at issues and solutions.

A few points from the discussion (facilitated by Cathy Warwick) on our table include:

  • Women need individualised care within a system that genuinely supports the range and variety of experiences and needs women will have
  • Polarisation – high risk/low risk and between obstetricians and midwives – is very unhelpful
  • Connected with the above point, for better collaboration and teamwork between midwives and obstetricians – no ‘them’ and ‘us’. There is evidence to prove that training and working together as a team provides positive results.
  • Dignified care and safe care need not be mutually exclusive (contrary to what some of the polarised debate about where is ‘best’ to give birth may suggest)
  • Time for training – health professionals want to do the best they can for their patients, but are constrained by lack of time for training. Training on things like team working (such as cross over training between midwives and obstetricians so each can better understand each others’ perspectives) and effective communication would be invaluable.
  • Targets – such as C-section rates – are a barrier to women receiving care that meets their own individual needs.
  • Policies, procedures and guidelines are important of course, but there needs to be more encouragement for health professionals to use their own judgement to respond to women’s individual needs without fear of punitive action. This connects to issues relating to training and teamwork – enabling staff to do their jobs and giving them confidence in their practise – in short, empowering them to do their best.

Feedback from the other tables was insightful, including this point that being part of #HugosLegacy was music to my ears…

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There needs to be a seamless care pathway to better meet the needs of mums whose babies are in the neonatal unit, as described in my post about what I want the review team to know.

Other points of insight included:

  • Need to make sure good practice can be shared across hospitals
  • Need to find ways to make sure care is women-centred – this goes back to tick boxes and things like C-section targets.
  • Need for better postnatal care.
  • Need for commissioning that is better connected between CCGs, local authorities, and NHS England.
  • Need to look at culture – acceptance that innovative vision is the way forward to make the changes that need to happen.
  • We need to manage risk, risk should not manage us. Antenatal education needs to empower women to make the right choice for them.
  • We need to eradicate concept of ‘high risk/low risk’.
  • Women and their families need to be more involved in the creation of pathways
  • Evaluation methods need to be more useful for service users – and the feedback meaningful.
  • A woman needs to be seen as a whole person, not a womb with legs – her emotional and psychological needs, for example, need to be considered too.

Three crucial concepts are: language, behaviour, and leadership.

(This is not an exhaustive list, and I may have missed things!)

There are a few issues that bear further exploration, for example: the remit of the review includes experiences up to six weeks after birth. This has the potential to miss two crucial issues: postnatal mental health, and the needs of mothers whose babies are in neonatal care, and/or who suffer a loss. The needs of these women extend well beyond the six week timeframe, and have long-lasting, serious consequences if those needs are not met.

I would be interested to see how the review incorporates these issues.

From a personal point of view, the event gave me a wonderful opportunity to catch up with and meet fantastic people whom I have got to know through social media. I won’t try to name everyone because I usually end up missing people out, but here are some photos…

Flo and I managed to stop talking long enough to take a photo

I loved seeing Alison Baum again (she’s CEO of Best Beginnings, creator of the DVDs for which people so generously donated money for Hugo’s first birthday) and meeting Heidi, founder of the MAMA Academy, of which I am proud to be an ambassador.

Meeting and having a chat with Jacque was fab

Gill and I enjoyed a lovely evening chatting. We forgot to get a selfie, but I have a picture of my pink shoe on my pink bag…

Flo took a JFDI #MatExp view to sharing the campaign, with one of the brilliant graphics and giving people an overview of the Whose Shoes game.

I may be biased, but the innovative, grassroots, no-hierarchy approach of #MatExp is key to the success of the review. It is heartening to see there is interest:

The event nearly ended in tears for me, however. Chatting about #MatExp to two ladies at the end of the event led to me sharing my own experience. Asking how long Hugo lived for (35 days), they commented that it was ‘quite a long time’. I disagreed, saying that it was not nearly long enough. Objectively, I know that as Hugo was born at just 24 weeks the fact I got any time with him at all was miraculous, and I am very grateful for every precious moment I had.

But a tip for others when talking to a bereaved mother: DO NOT try to tell the mother that they are in any way ‘lucky’, and especially DO NOT persist in your point of view once the mother has expressed upset.

The women did apologise, saying it’s difficult to know what to say to bereaved parents. Another tip: empathy is key. ASK the parent how they feel, and if you really don’t know what to say, STOP TALKING.

Considering the breadth of experience of women – and men – attending these events will have, taking a moment to consider sensitivity, as well as sensible things to say (and not say!) is crucial.

Fortunately, it did not mar the very constructive and productive day. I hope we can see our thinking translated into real action and change for women and the staff who care for them.

Next steps are…

and if you want to be involved…

 

 

Mums' Days

Another Year Older – And I Am Glad

It’s my birthday tomorrow, another year older.

And I’m glad.

I don’t have to go to work; I have a lovely day planned. Cards have already arrived, yet to be opened; and if I am lucky I may even get some gifts.

But it is not for those reasons I am glad it’s my birthday tomorrow: I am glad because I have lived another year, and I am growing older.

I am not going to pretend to be 21 again. Instead, I’m proud to be just two years shy of the big 4-0.

Why this gratitude and pride to be growing older?

Because it is a privilege, a gift denied to so many. An occasion to celebrate.

My last birthday felt like it was just another day: the pain of Hugo’s death still raw, I did not feel like celebrating, nor did I feel like I had anything worth celebrating. My son had died in my arms just a couple of months previously; my pregnancy had ended prematurely in a very traumatic fashion; my life had gone so very awry.

Last year, I felt incapable of feeling happy, or even that I should ever allow myself to feel joy.

Fast forward a year, and some things have shifted. My heart remains broken, the trauma remains, my life still has gone awry. But those things now feel different, and I have a different perception of life.

This year, I feel more capable of feeling happy, and that I am allowed to feel joy. Indeed, I need to feel joy – and I find it in the small things like nature, the seaside, a cuddle.

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It’s an irony of life that when as children we are eager to be older, to be an adult with responsibilities and to make our own decisions. Yet when we are an adult we wish we could liberate ourselves from those wished-for responsibilities, slow down the clock against ageing.

A decade ago, I was dreading my 30th birthday. It felt so old! Of course, when I reached the milestone I felt no different. In fact, if anything there are ways in which my thirties have been my best decade from the point of view that I am comfortable in my own skin, feel better able to be myself, and I have a direction in life. I wouldn’t like to repeat my twenties (and my teens? Don’t go there), even considering the benefits of a body that has not been ravaged by ten or more years of ageing….and life.

And life is what is all about, isn’t it?

Yes I have grey roots. I visit my hairdresser every two months to get them covered up and to be honest, they start being visible again after two to three weeks – I don’t stress about it.

I have wrinkles around my eyes, despite using eye cream. Again, not worth worrying about: they are a sign of ageing – and of laughter and tears.

Those tears have helped me find a balance in life:

I don’t spend time worrying about what I can’t change – with myself, and with others.

I don’t get involved in gossip, or other people’s dramas.

I recognise that I am me, I am enough.

The balance helps me find more time for laughter. Laughing loudly, not worrying what others think of me.

Instead of criticising what I see in the mirror, I reflect that I am fortunate to have what I do. Instead of wasting time worrying about things that I can’t change, I try to make the most of what I have.

I know life is too short to not indulge in a little of what I fancy – we do not know what is going to happen tomorrow. That said, while tomorrows are not guaranteed I strive towards achieving a healthy balance to make sure I can enjoy the tomorrows I am blessed to receive.

And tomorrows are what birthdays are all about. The traditional salutation for birthdays is “Many happy returns of the day”.

I hope my birthdays return many more times in the coming years and decades.

I hope I have to visit my hairdresser more regularly to cover my ever-increasing grey roots, and that I have even more lines around my eyes from laughter. I cannot say I hope to not add to those lines through tears, because that is something I cannot control.

Another year older tomorrow, and I am glad.

I hope for many happy returns of the day.