What a Week: Time to Refocus

What a week! There are many lovely and exciting things to tell you about, dear readers.

But first, a moment of reflection. I’ve been distracted from my blog (I’ve really missed it!) and from my usual self-care techniques by some upsets with people about whom I care deeply. The upsets were on social media – as wonderful as social media is, misunderstandings are bound to happen from time to time. I’ve been at the receiving end a number of times and whenever the other person has apologised, I’ve acknowledged that while their comment hurt, I know it was unlikely to be intended and accepted their apology.

Anyway, this time my words were the cause of unintentional upset and for some reason my apology seemed to make it worse. To cut a long story short, I made myself physically ill with the stress of it all.

So, I am taking a step back and reassessing what is important in my life, and what I need to focus on. Firstly myself: I reminded myself of the very wise advice I wrote in this post. By trying to make other people happy, I wasn’t meeting my own needs – not by a long shot. I am who I am – candid, honest, enthusiastic and passionate about getting on and making change for other people’s benefit. I have a dry sense of humour, and with that I am kind, considerate, compassionate, and empathetic. I know I am a good person, I am happy with who I am and my motives for doing what I do.

My first step towards self-care was a lazy morning and a long cuddle with Fat Cat that we both thoroughly enjoyed.

The reason I mention this is the same as I mention anything on the blog – not to ‘pick on’ anyone or to make them feel bad, but to make a wider point about reflection and thinking differently. I am all about the bigger picture.

I am now doing my Taylor Swift dance, shaking it off and focusing on the positive. Ready? Let’s go!

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

Work

My phased return to work continues to be much better than I anticipated, I am relieved to report. My manager and colleagues are wonderful; very kind and supportive, and understanding of my needs. Colleagues have welcomed me back, telling me I have been missed, and that they are glad to have me back. No one has pried, which has really helped me manage my feelings of anxiety and vulnerability.

Another huge positive is that I am helping lead a project about my great passion – patient experience. It’s really exciting, and it’s great to have something to feel excited about.

There is still a long road ahead of course, but so far so good.

Neonatal Parents’ Meeting

On Wednesday I went to London for a Neonatal Parent Advisory Group meeting. It was tough – there were tears from me – but such a constructive meeting. Sadly, the other parents who attended have also experienced loss; I appreciated being, for the first time, in a group of people who really ‘get it’. We are going to be working together to use the benefit of our experiences to help other families, which feels to me to be a privilege.

Maternity Strategic Clinical Network Meeting

That meeting was followed by attending this meeting to talk in front of around 100 people about Hugo’s Legacy, my involvement in #MatExp, and my experience of a Whose Shoes workshop as part of a presentation about the campaign and the pilot workshops.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Don’t tell anyone, but my week had been so busy I prepared my talk 30 minutes previously – I think I did alright. Lovely people came up to me afterwards to say Hugo’s story had really moved them, and I am also going to get involved with the work of the strategic clinical network to help shape better support for women who have similar experiences to mine.

I also really enjoyed the chance to have a face-to-face chat with #FabObs Florence Wilcock, after spending so much time communicating online. I have just realised we should have got a selfie!

Butterfly Awards

The wonderful Mel, who is behind the Butterfly Awards has invited me to give a speech inspiring other bereaved parents to share their stories, and to highlight why people need to put their temporary discomfort to one side and take the time to really listen to the stories. The invitation came about my latest #MatExp action, and I was honoured to be asked to and to accept.

I am also honoured to be shortlisted in the author/blogger category in the awards for the second year running. I know you will all be delighted to learn I’ll be asking you to vote for me again in a couple of months’ time!

My latest #MatExp action selfie

Other exciting things…

It’s naughty to tease I know…but I have been invited to some other things that I can’t tell you about yet, but I will as soon as I am able!

Self-Care

The kind people at Lumie have sent me a SAD and energy desk light to review – the idea is it helps prevent the slump that usually prompts me to hunt down some chocolate. I’ll be letting you know how I get on.

Most excitingly, I’ve been sent a colouring book to review! It’s a hard life, but someone has to put themselves out…and it’s a great reason to ensure sure I definitely make time for self-care.

I’ve also had my hair chopped. It had been getting shorter and shorter over the past year – the new ‘do is a braver version of the graduated bob I had last time. I love it – it is the perfect compromise between a bit of flattering face-framing length and hassle-free lack of length.

The new ‘do from the side.

Phew! Right, time for more self-care – and to make sure I have energy not only for the things I need to focus on, but BritMums Live too! I’m very excited to see all my friends.

 Word of the Week: phew!

Communication Matters: Results of the 2014 Neonatal Survey

Imagine seeing your new baby in an incubator, covered in tubes and perhaps ventilated to help them breathe. Imagine seeing your new baby in pain and there being little you can do to make it better. Imagine being surrounded by unfamiliar machines that beep relentlessly, unfamiliar words, terrifying news, feeling constant bewilderment. Imagine not being able to hold your new baby, cuddle them, do all of the things you had expected to do with them.

For most parents, this is unimaginable. But it is the reality for parents whose babies are in neonatal care.

The results of the Picker 2014 Neonatal Survey reveal many heartening, positive results but a need for improved communication. Effective communication is at the centre of good health care and patient experience. Effective communication is my passion, and the focus of Hugo’s Legacy – the findings demonstrate just how much this work is needed.

Being a patient in hospital yourself can often present plenty of challenges: you may be in pain, uncertain of what is happening, and feel disempowered. These feelings are increased exponentially when your child is in neonatal care.

This section of the report – the areas that performed least well in all units in hospitals across the country – tells a compelling story of what most needs to be improved. Sadly, none of it is news to me.

Responses to question F2 “Were you given enough information to help you understand your baby’s condition and treatment?” are concerning, with 30% of respondent say they did not receive any written information at all. That is unacceptable.

In my view, the question is misphrased. It would be more helpful to ask “Were you given information to help you understand your baby’s condition and treatment in a way that was useful to you?” If I had completed the survey (I was excluded because my baby was not ‘discharged alive’ – more of that later) I would have said I had more than enough information – too much, in fact to the point it was not useful to me because I was so overwhelmed by it, I didn’t read it.

There is, of course, no one size fits all for communication. Different people need information presented in different ways. Happily, there are many alternatives and units need to make sure they are being proactive to make sure parents know about them all:

– The Bliss guide (this is what I was given: beautifully researched and presented, but far too much for me to take in)

– Tommy’s handbook, which is now available as an app

– Best Beginnings DVDs (Hugo’s Legacy helped fundraise for DVD players to show these films to parents at St George’s)

– Simplified generic and unit-specific information available in communal parents’ areas (I designed a poster for St George’s, where Hugo was cared for).

The information that is offered to neonatal parents needs to reflect the diversity in their understanding, literacy, and the fact that when you are exhausted and terrified information is not always absorbed effectively.

Hugo

As mentioned above, surveys were sent only to parents whose babies were ‘discharged alive’. I completely understand why this would be the case: there are so many complex and sensitive considerations surrounding bereavement. However, this means a vital piece of the puzzle is missing from the survey: bereavement care and information. For parents whose babies die, this is as vital a part of the journey and experience as any, and it needs to be considered in order to give a full picture.

For example, question C11 “Did staff give you conflicting information about your baby’s condition or care?” The last week of Hugo’s life was fraught with ecstatic highs of hope, and the deepest lows of despair. The effectiveness of the steroids Hugo had been given to help his lungs had reduced along with the dosage. Frustratingly, we received differing opinions from different doctors: one told us Hugo may need more doses while he grew bigger and stronger on the ventilator, while another told us unless Hugo reached a certain point by a certain day to enable him to be taken off the ventilator “there was no point.”

There are no prizes for guessing which version I chose to give most credence to. Ultimately, the second doctor was correct. Sadly, the first doctor’s view made the news that there was no more hope for Hugo a terrible shock – I was not expecting any such news that day – not to mention the insensitive way such devastating news was delivered.

Bereaved parents will have just as much to say about their baby’s care as parents who took their babies home. There are so many ethical considerations surrounding surveys, but a way needs to be found to make sure bereaved parents’ voices are heard.

Consider, for a moment, the point about 30% of respondents saying they were not given any information. This is bad enough – just like any new parent, those early days and weeks with your baby are precious, and you cannot get them back. We cannot know how bereaved parents would have responded to this question because we were not asked – but consider, for a moment, the devastation and heartbreak of a bereaved parent. How do you think they might feel if they discover, after their baby’s death there was information that could have helped them better understand their baby’s care, or how to better get involved with their baby?

There really can be no more effective motivation to ensure neonatal communication is effective.

St George’s has been brilliant in listening to my feedback, and implementing changes where necessary. I hope other units follow their example.

Mummy, Daddy, Hugo.

To give credit where it is due, I do have more positive responses to some of the questions in the excerpt above. The night before Hugo was born, staff visited me to tell me what to expect after he was born (A2); I was given two photographs of Hugo so I could admire my son before I was able to see him (B2); we were able to speak to a doctor as much as we wanted (C7), even if the information was inconsistent; I was offered counselling from the unit’s counsellor while Hugo was in the unit, although it would have been useful to have known earlier it was available for bereavement, too (F4); we were very fortunate to stay in the Ronald McDonald House on site (F5), which was invaluable because we were a two hour drive away from home. Anecdotal evidence from other parents suggests differing levels of help and support in these vital areas.

I was cared for in the same postnatal ward as women who had their babies with them (B3), which was not ideal but I was fortunate to have my own room. I understand other women have not been so fortunate. Connected to this point, there needs to be better communication between postnatal wards and the neonatal unit, and a better understanding by maternity staff of the needs of women who do not have their babies with them.

My hope is that as a result of the survey results, improvements are implemented where appropriate for the benefit of all neonatal parents and their babies.

Communication is at the centre of everything

 

May is Preeclampsia Awareness Month: Why It Matters to You

In February 2014, I was 23 weeks’ pregnant with my first baby. I had been feeling a bit unwell for a few days: indigestion, breathing was difficult, and I had suddenly weight. All normal pregnancy gripes I thought, but I checked Dr Google just in case, as you do.

Dr Google suggested preeclampsia. “Don’t be so silly,” thought I. “It’s like Googling a headache and diagnosing yourself with a brain tumour. I’m only 23 weeks’ pregnant after all, and preeclampsia happens only in later pregnancy.”

It turns out Dr Google was 100% correct on this occasion.

I was wrong. So very, very wrong.

A week or so later a routine midwife appointment showed problems with my blood pressure and urine, and I was dispatched to the local hospital where I was diagnosed with not only severe preeclampsia, but also with severe HELLP syndrome.

I was seriously ill. Our much-wanted baby was in serious trouble, too.

The only cure for both of these illnesses is for the baby to be born. Otherwise, both mum and baby will die.

My beautiful little boy, Hugo, was born three days later by emergency Caesarean section. He weighed just 420 grams. Hugo was so small and premature that despite everything possible being attempted to save his life, he died in my arms 35 days later.

I am heartbroken.

Me and Hugo

There is nothing that can be done to change what happened to me, or to bring Hugo back. What I can do is to help make sure everyone knows about these devastating pregnancy complications and what to do about it.

What are Preeclampsia and HELLP Syndrome?

Preeclampsia and HELLP syndrome are illnesses that can happen only in pregnancy. That is because they are related to the placenta, the organ a woman’s body grows to keep her unborn baby alive.

No one knows exactly how or why the conditions start, but we do know that it is related to a problem with blood flow to and from the placenta. In the simplest terms, the problems with the flow deprive the baby, leading to growth restriction. The placenta responds by sending back things to the mother, which then causes her problems.

They can happen any time after 20 weeks (and in very rare cases, before).

What are the symptoms?

• Heartburn/indigestion with pain after eating
• Swelling, and sudden weight gain
• Shoulder pain or pain when breathing deeply
• Malaise, or a feeling that something ‘isn’t right’
• Pain under the right side of the ribs
• Headache and changes in vision (‘flashing lights’).

Not all women who have these illnesses will have all the symptoms – I never had the headache or ‘flashing lights’. There are a couple of symptoms, such as protein in your urine and high blood pressure that are difficult to spot yourself, which is why it is vital all pregnant women attend their antenatal appointments because these things are routinely checked.

Of course, some of these symptoms happen in pregnancy anyway. If you are worried, it is best to get checked out anyway – visit your midwife or doctor. They can check your blood pressure and urine and you will probably be sent back home again. Thankfully, these illnesses are rare, affecting around 5% of pregnancies, which means that you are 95% likely to not have preeclampsia.

Are these illnesses really that bad?

Yes.

The ‘pre’ part of ‘preeclampsia’ is important: eclampsia means seizures that can happen when your blood pressure gets too high. It is important to remember that preeclampsia is bad, and women need to receive medical attention so it does not reach the eclampsia stage.

HELLP syndrome stands for Haemolysis, Elevated Liver Enzymes, Low Platelets – serious stuff. I nearly experienced multiple organ failure. Other women with HELLP syndrome have had actual organ failure, and some have sadly died.

Preeclampsia and HELLP syndrome can be catastrophic for babies, too, such as for my Hugo. That is because the only cure is for the baby to be born, regardless of gestation. It is very rare for these illnesses to strike so early (23/24 weeks); most cases happen later in pregnancy, when luckily many babies have a better chance of survival.

I’m not planning on getting pregnant – why does it matter to me?

You might not want a baby, or your child-bearing days may be over. You may also be a man.

Whoever you are, you are likely to know a pregnant woman, or someone who is planning to become pregnant. These illnesses are rare, but they are real and they happen to pregnant women today, not just in the history books.

The more people who are aware of the symptoms the better: to save the lives of women and babies.

There really is no better reason to explain why it matters to you. No better reason to care, to remember the signs and symptoms, and to spread the word.

 

For more information:

NHS Choices

HELLP Syndrome on the Pre-Eclampsia Foundation website

HELLP Raise Awareness

My HELLP Symptoms

Everyone should know about pre-eclampsia and HELLP syndrome

 __________________________________________________________

Reading Through Hugo’s Legacy

Some of the funds raised in celebration of Hugo’s first birthday have enabled First Touch to buy some beautiful box sets of books for families to enjoy reading to their babies.

First Touch is the charity for sick and premature babies at St George’s Hospital, where my son was cared for.

Martin and I loved reading to Hugo in his incubator. Hugo loved it, too. Our son was comforted by the familiar sound of his parents’ voices in such an alien environment.

Reading to our boy gave us something constructive to do. As a parent of a premature baby, many hours were spent by our baby’s incubator, mostly feeling rather helpless. Reading stories to Hugo was something useful that we could do.

Mummy, Daddy, Hugo

We learnt that research had suggested that reading to your premature baby helps aid their brain development. So, with all these benefits to be gained from reading to Hugo, we read to him a lot.

Despite being told the reading material didn’t matter – it could be the newspaper, or the phone directory for all Hugo cared (his parents’ voices were more important to him than the content) – we preferred to read children’s books to him. It felt right, and to be able to do such a ‘normal’ task as a parent felt comforting in a world that had been turned upside down.

Both Martin and I are bookworms, and we’d bought some beautiful boxed sets of classic children’s stories for the baby we were expecting. The trouble was, they were at home two hours away (I’d been transferred from my local hospital in Bedford to St George’s in south London, a specialist hospital better equipped for how sick both Hugo and I were).

A lovely friend had sent us a copy of Guess How Much I Love You. It’s a beautiful story, and absolutely perfect for Hugo and me. I read it again and again and again. Improvisations were made, the pictures were described, and comments made about them. There were a few children’s books in the parents’ room for visiting siblings, and we read them until we were well and truly bored of them, too.

We especially enjoyed reading the couple of Mr Men books from the parents’ room, though.

One of my fondest memories is, ironically, from the day that Hugo died. After we had received the news that there was no more hope for Hugo, I had an epic three hour cuddle with him, skin-to-skin. Daddy sat close by, and read to us. One of Martin’s favourites was the Animal Bop, which is a numbers and counting book made fun through rhyme (Daddy loves numbers; Mummy, not so much). On that day, Martin somehow managed to make reading the book sound very silly, which made me laugh. Hugo liked that, too, and I remember him boogying and kicking his feet against me. It made us feel like we were a proper family, for a few precious moments.

Hugo was buried with a selection of favourite Mr Men books: Mr Strong, Mr Brave, Mr Happy, and Mr Tickle. Martin and I read them to Hugo before leaving them with him.

Books and some of the other treasures that help keep Hugo company.

The amount of money that was raised on the occasion of Hugo’s birthday exceeded our wildest expectations. There was lots of money over and above the original fundraising purpose (DVD players and headsets for information DVDs). While thinking about how the excess funds could be used in Hugo’s memory, I had a brainwave: to buy some box sets of classic children’s books for other parents to read to their babies. Hugo’s legacy could help other families enjoy such precious moments.

First Touch agreed. They ordered a box of Mr Men books, and the complete works of Beatrix Potter. There is a box each for the neonatal intensive care unit, which is where Hugo lived, and for the special care baby unit (they are part of the same ward, but in different units a short distance apart).

Mr Men and Beatrix Potter book box sets.

I would like to extend a HUGE thank you to everyone who has so generously donated to Hugo’s Legacy. The Just Giving page remains open. The money will continue to help sick and premature babies and their families, and we shall continue to keep you all up-to-date about how the funds raised are spent.

Raising Money for First Touch for Hugo’s First Birthday

Martin and I are fundraising for First Touch, the charity for sick and premature babies at St George’s Hospital in Hugo’s memory, and in recognition of his upcoming first birthday.

A significant part of Hugo’s Legacy is improving communication and information for parents who have a baby in a neonatal unit. We were given a stack of beautifully-presented booklets and leaflets that were just too much to read and take in, meaning we missed out on valuable information about Hugo’s care.

The charity Best Beginnings has a fabulous series of films called ‘Small Wonders’. The films talk about all the things neonatal parents will need to know, from birth; getting involved in cares; expressing breast milk; skin-to-skin cuddles; progressing to special care, and taking your baby home. Things are clearly explained, and they are a valuable source of helping parents familiarise themselves with the neonatal unit environment, and empowering them to get involved in their baby’s care. Each of the films are only a few minutes long, making them beneficial for the short attention spans of tired and stressed parents!

For parents whose baby sadly dies, there is also a film about bereavement.

First Touch is now fundraising for nine portable DVD players so parents are able to watch the ‘Small Wonders’ films by their baby’s side. This is a brilliant idea and will be invaluable for parents. The DVD players cost £85 each. Four players have so far been funded, leaving a further five to find money for – plus headphones so parents can listen to the DVD without disturbing others.

Raising money for these DVD players in Hugo’s memory is Martin’s lovely idea to mark our special star boy’s upcoming first birthday, which is on February 20. Please take a moment to visit our Just Giving page and give as much as you are able.

Since Hugo died, we have been fundraising for First Touch in thanks for all the unit did for Hugo and us and so far have bought an oximeter in his name.

Hugo’s first birthday will be a difficult day because he is not with us. However, we would like to celebrate how special our little Star Boy Hugo Boss is to us, and to so many others. We would like to pay tribute the difference he has made to so many lives – during his life and now, through his legacy. I would love to see #HugosLegacy trending on Twitter on February 20 – please help wish our boy a happy birthday by showing he will never be forgotten.