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.



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.

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

Communication is at the centre of everything


Life After…Hyperemesis Gravidarum

Today’s Life After…guest post is from the lovely Jenni, who blogs at Odd Socks and Lollipops. Jenni suffered hyperemesis gravidarum (HG) during her pregnancy. You may remember that Kate Middleton experienced it during her pregnancy with Prince George (although it was often described, wrongly, as ‘bad morning sickness’).

As Jenni describes in her emotive post, HG is much more than that. Jenni’s post is so very important because she describes how debilitating the condition is – and the devastating consequences of not receiving appropriate medical care or support.

Thank you, Jenni for sharing your story – I am sure it will help countless other women.


It was all very exciting and a bit scary seeing that positive test. We had 9 months to prepare for the biggest change in our lives. I dreamed of 9 months of buying all things baby related, spending hours browsing all those tiny clothes in the shops, planning and decorating the nursery. I envisioned, wandering (waddling) proudly around with an ever growing bump. These dreams lasted all of 2 weeks.

At 6 weeks my nausea started, creeping at first, a meal that I just didn’t fancy, feeling extra travel sick in the car, slowly it got worse. I was actually glad at first; didn’t sickness mean baby was healthy? And it would, of course, pass by 12 weeks, I could handle vague nausea for a few weeks. Piece of cake.


By week 10 I had been in bed for over a week throwing up most of what managed to pass my lips, which was rapidly becoming only sips of water. Everything smelt awful, the house, the outside, my husband. Any movement of the bed and the nausea got worse, most of the time I didn’t even have the strength to make it to the toilet. I gave up trying and lay there with a sick bowl next to me and my pockets filled with small plastic bags when I finally did start making the long journey down the stairs, sitting on each step and waiting, waiting until I know I wasn’t going to throw up – on this step at least, until I eventually reached the bottom and crawled on to the sofa.

I made the marathon trip to the Doctors a few times, sat in the waiting room swaying backwards and forwards, grey, praying I could last without throwing up in the middle of the waiting room. After two sets of medication which had done nothing to ease the nausea or the vomiting, I saw a different Dr who signed me off work for a month with Hyperemesis Gravidarum, told me the meds wouldn’t help so I should stop them and that all I needed was bedrest.


Most days I lost count of the amount of times I vomited. I couldn’t brush my teeth to get rid of the metallic taste which made the nausea worse because the thought of putting anything in my mouth made me sick. Some days I didn’t even go to the loo because there was no fluid – I realise now that I should have probably gone back to the Dr’s but I was too busy surviving each day.

I lay day after day, week after week staring blankly at a muted television not caring what was on an on my worse days hoping I would fall asleep and not wake up. I existed in a world where everything made me sicker – sounds, smells, bright colours, movement. Being awake was torture, only sleep offered brief, disturbed respite and I fell asleep knowing I would have to wake up and live through the hell again tomorrow.

One day I had made the effort to get up and have a shower, with my husband’s help, and I can remember vividly begging him hysterically to promise me that no matter what I would say in the future that we should never get pregnant again, ever. I remember most days wondering if I should carry on (was this a sign that I shouldn’t be a mum?). And most days I wondered if I could carry on – I know that some women feel they have to have terminations due to HG because they cannot cope, especially when they have children to look after and need to work. It was an awful thing to even consider in the darkest corners of your mind, terminating a healthy baby but it does cross your mind…

Finally, after what seemed like years, the vomiting started to happen less often and I could boast going X amount of hours without throwing up.   Then I went 24 hours without vomiting, it felt like such a milestone. At around the 19 week mark my vomiting was only occasional and stayed that way for the rest of my 41 week pregnancy.

The nausea however did not fade, it did not get better, it stayed with me until my daughter, Boo, was born at 41 weeks. The only respite was when I was sleeping, and the second I woke it hit me instantly again. Food tasted wrong and although I wasn’t throwing up it was still an effort to eat, and I could only stomach very few foods. Being nauseous all of the time zapped my strength and I felt exhausted and had to start taking iron tablets, which in turn made my nausea worse.

I had to force myself to eat every two hours otherwise the nausea became overwhelming, and I found it very difficult to function, I had returned to work at this point. The weight I had lost, about 10kg, slowly returned as my pregnancy progressed and my daughter was born healthy – which I am immensely grateful for.

I feel the guilt of taking those tablets even though it was only for a short time (especially after the Dr told me I shouldn’t be taking them). I feel the guilt of failure – feeling like my body had failed me – like I wasn’t up to the task of becoming a mum, a warning that I was doomed to fail from before I really started. These feelings not helped by the constant stream of advice…You are just pregnant not ill … Have you tried ginger (have you tried throwing up ginger?) … It’s all in your head … Morning sickness goes at (insert arbitrary week here)… Go for a walk…

I was essentially left to suffer, and because I had neither the energy nor the presence of mind at the time I didn’t argue or research any other options… this makes me feel angry and upset. There are lots of treatment options for HG, safe treatment options. No woman should be left to suffer. There have been deaths due to HG related complications in the last ten years in the UK. No ginger biscuit is going to solve HG… proper medical treatment is needed not well-meaning, outdated advice.

It’s difficult for me to reconcile what should have been one of the happiest times of my life with the worse experience I have ever gone through. I cannot help but feel angry that I essentially ‘missed out’ on pregnancy, a lot of this anger is directed to Drs who should have given me the correct treatment and towards my own body for letting me down and failing me so miserably.

I have lost count of the amount of times I was told ‘It’s worth it’ whilst I was pregnant. And if I look at it like that, yes it was. Boo is worth it, worth every single second of the nausea and the vomiting.   But I very firmly believe that it wasn’t necessary to pay that price. Boo and I didn’t have to go through this if I had been given the proper treatment.

Once I gave birth the nausea faded and it thankfully became just a memory, one easily forgotten in the whirlwind of newborn baby, sleepless nights, feeding and nappy changes. Sadly, HG has had some lasting effects: my newly developed obsession about hands being completely clean at all times; food if I even think it could be off has to go in the bin, even if there is no reason to think it would be out of date; certain foods I still cannot eat; and catching a sickness bug a couple of months ago was a horribly traumatic experience and caused major panic.

I live with the constant fear. Fear of feeling sick, of being sick and of feeling as helpless and worthless as I did when I was pregnant. There is also the guilt about what damage may have been done to Boo, the grieving for a pregnancy which I never ‘had’ (which sounds silly when I write it down), the jealousy when I hear other ladies are pregnant (which I have been assured is common by other HG survivors but I still feel ashamed to be listening to the green eyed monster). I am also grieving for a baby I will probably never have, a sibling for Boo. I am not sure I am strong enough to go through HG again, I am not sure I would be able to look after myself and Boo.

I try hard not to feel guilty that I am probably not going to give Boo a sibling (even though in my heart of hearts I think she should have a sibling). I quietly grieve for my pregnancy and the baby that never will be. At times I feel ridiculous for feeling like this, selfish even, because I have Boo, she is my world, she should be my focus and nothing else. And I do count my blessings, I have Boo, she is healthy and we have a happy life with my husband and as a stay at home mum which means Boo and I have all the time in the world together.


If you would like to share your Life After…story, please get in touch:





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What Ifs and Wonders

Do you remember Sliding Doors, that Gwyneth Paltrow film from the 1990s? The film explored what happened to Gwynnie’s character – and her life – as a result of getting on the tube before the doors slid shut, or just missing the tube.

Many of us have moments where we wonder ‘what if…’ for so many things. What if we had said ‘yes’ or ‘no’ to something we hadn’t or had done? What if we had turned left instead of right that day…the possibilities are infinite.

In the vast majority of cases we can’t change what has happened, but that does not stop us wondering.

I have had some huge what if questions since I got ill, including:

– What if I had chosen a midwife appointment on the Thursday afternoon, rather than the Monday (Hugo was born on the Thursday morning)? Would Hugo have lived at all? Would I have died?

– What if my condition had worsened on that Monday night, and Hugo had to be born at my local hospital. I probably would never have met him. The team at the local hospital would have done their best, but they were not specialists. Hugo would have had a long ambulance journey to a specialist hospital without me, with me following as soon as I was well enough. Being at opposite ends of the same hospital was bad enough.

– What if Hugo had died before I had a chance to meet him?

– What if Hugo had died without me being with him?

– What if HELLP syndrome and preeclampsia happened a few weeks later in my pregnancy – would Hugo have survived, being bigger and stronger?

– What if I hadn’t got ill at all, and went on to have a full-term healthy pregnancy? What would my life be like now, with an 11 month old baby? It would be amazing – but I find it difficult to picture.

– What if I didn’t have so many wonderful, supportive people around me?

– What if I didn’t have my blog to pour all my feelings out in, and to give me a purpose after everything that happened?

– What if social media didn’t exist, and all the support that goes with it?

– What if I had got the support I so badly needed sooner?

These are just a small sample of my ‘what ifs’ and wonders. Different outcomes for some of them are terrifying, and do not bear thinking about.

But I am human, and these thoughts come often unbidden. How I respond to them can depend on my mood, the nature of the thought, and the context. I try to not expend too much emotional energy on them.

I try to acknowledge them, waft them away.

I am very unlucky to have got a rare pregnancy complication, and at such an early stage.

I cannot change what happened, I cannot bring Hugo back, no matter how much I wonder what would have happened if only it had happened a few weeks later. Or not at all.

I try to remember that I am lucky to still be here. Physically unscathed.

And I am lucky to have spent 35 precious days with my gorgeous little Hugo. Other women who had the same illness were not so lucky. I have many precious memories no one can ever take away from me.



You Baby Me Mummy

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

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?


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


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Language Matters: Health Communication and Baby Loss

Being in a healthcare environment – whether that be a GP’s surgery or a hospital – can be a hugely disempowering experience. You are likely to feel especially disempowered when you receive bad news – your head spinning, struggling to take in usually complex information. Then, more than ever healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

Professionals need to be able to listen effectively, which includes reflecting back what a patient has said to check their understanding, and to make sure they understand a patient’s views.

My son Hugo was born 16 weeks prematurely because I had the life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia. My beautiful boy fought so hard, but died in my arms at the age of 35 days.

Everything possible was done to save Hugo’s life. Sadly, he was too small, and too premature.

There were, however, areas of both mine and Hugo’s care that could have been better. These issues were around communication – there were occasions where stresses could have been avoided if there had been better interaction between staff, or if we had been provided with more suitable written information.

I’m proud to be the #MatExp language champion. Effective language and communication underpins so much, and even a few thoughtless words can cause enduring hurt.

A huge thank you is owed to everyone who shared this post asking parents to get in touch about their own communication experiences around baby loss. An even greater debt of gratitude is owed to those who got in touch to share their experiences – good and bad.

It was interesting that the bad experiences reflected what I suspected – they are focused around failing to reflect that each patient is an individual, with their own hopes and dreams. The incidences of good communication are heartening.

I will take the poor first, so we can end on a positive note with the good.

One mother had a medical termination because her baby was diagnosed with a condition that meant they sadly would not live. I was appalled at what the mum had to say:

We were ushered in to see a male consultant. He obviously did not have adequate time to spend with us. Everything he said felt like one more thing he had to tick off his to do list. His comment: “at this point, I have to say that I’m sorry for your loss” was the least genuine and sympathetic expression I have ever heard in my life. He then followed this by referring to our baby, OUR BABY, as the “retained product of conception” and the loss of our baby, THE LOSS, as “the event”. He sickened me!

Another mum said:

…we had decided to have an amnio. We explained this to the Community Midwife (whose first words as we walked in was ‘oh this will be an easy appointment’….how little she knew!) Her response? ‘But how would you feel if you lost it and nothing was wrong’ said in a very judgemental way. As if we had not consider the risks…..I left the appointment gobsmacked she could be so insensitive and was so upset, I sobbed all the way home.

A woman who had a miscarriage said:

He then flippantly answered my questions in a nonsensical fashion. “It would hurt no more than a period” (I found labour easier, was offered pethidine for the pain all whilst being physically sick). “I wouldn’t need to stay the night” (ummm…I did…. “I wouldn’t bleed much” (not true). And my personal favourite: “no, you don’t need any medication now. Go home and just turn up at any point on Friday and we’ll deal with you.” (15 minutes later and in a taxi on our way home I noticed numerous missed calls. As we thought, I had needed to take the first of my tablets and was asked to return to the hospital as soon as possible.)

The two examples around my own experience include when discussing Hugo’s end of life, in my distress I cried how guilty I felt. The consultant said:

All mothers feel guilty.

That may be so – no mother of a premature baby, or a baby that dies for whatever reason is at fault. Knowing that does not diminish our sense of guilt, and that comment felt very dismissive. I wanted to talk about why I felt guilty, and be listened to.

The other example relates to a midwife from my local hospital phoning me the day after Hugo died. In a cheerful voice, she asked how I was. I replied that Hugo had died the previous evening. It was evident she had not heard me, because continuing in that cheerful voice she said “Oh ok, I understand you are at home now, would you like a visit?” Even if Hugo had not died, the tone and content of the call was inappropriate. Hugo would have been 29 weeks at that stage and while the unit that cared for him is excellent, there is no way he would have been home by that stage. It seemed to be a failure of checking the notes properly.

These are all examples of health care staff using jargon, and impersonal medical terminology. I am sure (and hope) these staff did not intend to be impersonal or insensitive. I am sure (and hope) these staff simply failed to put themselves in these women’s shoes, to consider how they were feeling at such a sad and difficult time, and to offer empathy. In the example of the midwife who phoned me, she needed to have used a different tone to the one she would commonly use with the happy events of mums at home with their healthy babies.

Effective communication is something I am passionate about, for the benefit of patients – I have worked in the profession within the NHS for several years.

Thankfully, we do have positive examples of communication to talk about.

The woman who had a miscarriage gave this emotional account:

The ward matron ushered us into her office and apologised profusely. She gave me my tablet and then offered to answer honestly any questions we had. We went over everything again but this time we received compassionate and truthful answers. “Yes, it would hurt lots but you will be offered pain relief”. “You will need to stay the night”. “It will be hard but we will be here to help you get through it”.

In the digital age, most of us will take to Google to explore our diagnosis and prognosis to find out more. Of course, while the internet has many useful, trustworthy sites, there are many that are complete rubbish (this is true of every condition, not just baby loss).

As one mum said about her baby’s diagnosis

Probably the worst thing I did was google the condition when I got home.

I found the same about HELLP syndrome – it is so rare, there is little information about it, and much of what I read was terrifying – not helpful to my emotional recovery.

Patients need to be guided towards trustworthy sites. I was heartened to read that as the result of the involvement of a bereaved mum, one hospital’s website has “information specifically about fetal abnormalities as well as details of the team of people who will be looking after them. When they leave the hospital after diagnosis they are given the website address and the number of a counsellor so they can look at it when the shock has worn off”.  The website also has some links to recommended forums. 

Happily, I do have examples of better communication of my own to share: consultants (both obstetric and neonatal) listening to me, and patiently answering my questions without patronising being an important one. Vitally, I have found the majority willing to listen to and take on board my feedback, and seek to reflect on their practice and make changes were appropriate.

That is heartening progress, for the benefit of other women during the heartbreaking time of losing a precious baby.

Language matters, always.