Life After…The Neonatal Intensive Care Unit

Raising awareness of issues affecting premature babies and their families is something I am very passionate about. I am pleased that today’s Life After comes from wonderful Catriona of the brilliant Smallest Things, which is focused on campaigning for babies born too soon. Here, Catriona writes about what happened after her first son was born much earlier than expected, and his stay in the neonatal intensive care unit (NICU).

Thank you, Catriona, for sharing your story and helping shed light on the life of premature babies and their parents.

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I was just six and a half months pregnant (exactly 30 weeks) when my first son was born. I hadn’t got the crib in which he would sleep, no baby grows or snuggly toys and my maternity leave was still weeks away. I wasn’t ready, but he was in a hurry!

My waters had broken at home and I had calmly taken a taxi to the hospital. I was in a state of shock, perhaps also in denial – this couldn’t really be happening, could it?

When the midwife told me my baby would be born very soon I still remember my words – ‘But I don’t have anything to dress him in’. My first instinct was to care and provide for him. I reached out to him when he was born, but he was whisked away to neonatal intensive care where a machine would breathe for him and an incubator would shield him from the outside world into which he was born so early.

He spent eight long weeks in neonatal care; but for those eight weeks, time and the world seemed to stand still.

Our life became the neonatal unit. The monitors, machines, incubators and tubes. The nurses and doctors, expressing and sterilising. Bottles and boobs, numbers and charts. Eight long weeks and the outside world ceased to exist. Our world was in the hospital fighting and growing.

The relief of ‘making it through’, of finally getting there and making it home was damped by the growing realisation that I was a NICU mum.

It seems strange to write about life after neonatal care, when in reality the journey continues.

I struggled to reconcile what should have been one of the happiest moments of my life, the joy of a new baby, with the reality of trauma, resuscitation, life support machines and emptiness. Pangs of jealousy crept in seeing heavily pregnant women and new baby photos were suddenly everywhere I looked. Sometimes I was consumed with grief and anger at my lost months of pregnancy, the lost time to prepare and the lost time with my baby. For a long time I was haunted by a dull ache on my chest where my baby should have laid his head.

As time went by the anger and grief settled, helped in part by learning that I was not alone in these thoughts; indeed they are common to many women following birth trauma or time spent in NICU. The dull ache on my chest no longer plagues me, although sometimes I wish it did. Instead it has been replaced by something much more unpredictable and invasive – anxiety and post-traumatic stress.

For parents of babies born too soon the slightest cough or cold can cause untold worry. For me, coughs and colds are synonyms with repeat hospital admissions and breathing difficulties; all contributing to vivid flash backs of alarming monitors, breathing tubes and the mechanical rise and fall of tiny chests. This is the untold story of neonatal care and this is how life after NICU can seem for many women. This is why I created and set up the Smallest Things Campaign last year. I didn’t want other mothers like me to happen to stumble across a website in order to discover that the feelings they were experiencing were completely normal and shared by many others. Instead mums should be supported throughout their NICU journey and yes, this means following discharge home.

For me life after NICU isn’t really life after NICU; it is a life-long membership to the Preemie Club, a former NICU mum through and through. I am fiercely proud of my boys, both born early, and am in awe of what I have seen them achieve. Yet even when they are well anxiety and PTSD is always lurking in the background. The journey and life after NICU continues…..

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

headspace-perspective@outlook.com

 

 

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

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When Is The Best Time To Try To Conceive After Loss?

My baby son Hugo died last year. We will always love Hugo, we will always miss him. He can never be replaced, but my partner and I would dearly love another baby, one we can take home. A question that has been troubling us is when the best time to start trying to conceive might be?

Put simply, there is no right time.

When I fell pregnant with Hugo I was full of joy, excitement, and a bit of anxiety – we both were – all pretty normal emotions. We were so looking forward to the arrival of our baby. However, at just 24 weeks I nearly died as a result of getting the rare pregnancy complications HELLP syndrome and pre-eclampsia. Hugo had to be born 16 weeks prematurely. He was growth restricted, weighing just 420 grams, and he died in my arms 35 days later.

That means if – when – I fall pregnant again I will be super high risk. I am especially high risk not only because I had the hat-trick of HELLP syndrome, pre-eclampsia, and intra-uterine growth restriction, but also because they struck me so severely, so quickly, and so early in pregnancy.

Me and Hugo

A frustrating thing about each of those three conditions is that we know what they are, and we know what the symptoms are. We sort of know what causes them (in very simple terms problems with the placenta, and the blood vessels force things back to the mother, which then causes her problems), but we don’t understand why it happens. If we don’t understand why something happens, we can’t prevent, or cure it (the only cure is for the baby to be born, which isn’t so bad if the mother is close to term, but catastrophic when it is so premature). We can only monitor.

And hope.

Pre-eclampsia and HELLP syndrome are relatively rare conditions. They most commonly appear later in pregnancy, and cases like mine are very rare. That means it is difficult for doctors to give a figure for the likelihood of it happening again. Doctors have given us different numbers which are educated guesses. Not to sound flippant for something so serious, but any figures we are given are about as meaningful as saying the chance of recurrence is eleventy-seven purple dinosaurs.

I might get to term without any complications. HELLP syndrome may appear again, but later in pregnancy and less severe. Or, it might appear as early as it did before.

No one can know.

Me at 20 weeks pregnant with Hugo.

Not knowing exactly what causes HELLP syndrome means it is impossible to do or not do anything to alter my chances of avoiding it in another pregnancy. There is no cause and effect, no ‘if this then that’. It is important for me to be as healthy as I can, physically, just as it is for anyone but there is no direct link, like there is with something like lung cancer and smoking.

One reassurance is I will have so many additional tests. Additional scans (including Doppler scans, which track the blood flow to and from the placenta) and blood tests will be able to track at an early stage whether things are starting to go awry. The difficulty with that, however, is there isn’t an awful lot they can do if things do start to go awry. I could only be monitored, and managed up to a point that is safe for me and the baby.

That means I am likely to be incredibly stressed and anxious prior to each appointment. I will probably have to have a bag packed at an early stage, and take it with me each time I go to the hospital in case I need to be admitted.

The stress isn’t helpful, of course. Increased stress leads to increased blood pressure, which is bad for me. Increased stress leads to an increase in the levels of a hormone called cortisol, which is bad for the baby.

So, I shall have to work on relaxation, meditation, positive thoughts. I will need all the support I can get to get me through that pregnancy. No additional stresses (as far as life can ever be controlled).

There is also the consideration that my pregnancy would not just be about me, but about the impact it may have on so many others, too. While the additional checks will reduce the chance of another pregnancy killing me, my other half, my family and friends will all be worried for me. My other half was just as devastated as I was when Hugo died. My family and friends were greatly upset, too.

Mummy, Daddy, Hugo.

Having my first pregnancy go so disastrously wrong does not give me protection from any other issues in another pregnancy, giving me more things to worry about. Miscarriage, stillbirth, other problems that mean the baby is unable to survive.

If another baby is born prematurely, we will have to go through the stress of neonatal care again, with an uncertain outcome.

One hope I hold on to is that another pregnancy without complications is possible. Another mum got in touch through my blog to say she had HELLP at 25 weeks and her baby also sadly died. Happily, she had another baby near term, with no complications.

It boils down to a couple of questions:

If I try and it goes wrong again, could I cope with losing another baby? I don’t know.

If I don’t try again, could I cope with never knowing whether I was able to take a baby home?

No.

With my history, another pregnancy will always be terrifying. I have to accept that there is no right time.

Anything can happen to anyone at any time, of course. The dilemma for us is that we know too much about things now. For all my talk about the value of information, I can see there are times when ignorance really is bliss.

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.

Have Courage, Be Kind: This Is Forever

One year ago my life changed completely, utterly, irrevocably.

Changes thrust upon me by the death of my only child, and the threat to my own life.

One year on from Hugo’s death, from my illness I can say I have survived. Or should I say surviving. This is forever.

In the earliest days after Hugo’s death, parents who had lived through similar grief told me the pain would diminish. Not get better as such, just become different. They are right: the pain has diminished because it is no longer that raw, all encompassing agony that made it impossible for me to smile, laugh, or think about anything but Hugo. It has evolved into a different sort of pain. The pain of absence, of loss. A shadow that is always over me, a deep pain in my chest, a constant ache, a fog.

The pain too, of knowing that as a bereaved parent, I will always stand apart in some way from other people.  The irony of knowing that in so many ways it is good to be different, that in so many other ways I celebrate diversity, but there is little to celebrate about what make me different to other mothers, the mothers who have never lost a child.

“How many children do you have?” Will never be a simple question to answer. That is despite preparing a standard answer: that answer is likely to change according to the context, the situation, how I think the person may respond, how I am feeling, how much I feel like talking about it all.

While I talk openly on my blog about HELLP syndrome, Hugo, his life, his death, and my grief here I am in control. On my blog I have the time and space to consider what I want to say, how much I say, and how I express it. My readers have the time and space to digest what they have read before commenting, should they feel they want to (there is no obligation). Or, they can walk away (close the browser) and I am none the wiser. In the virtual world no awkward silences, no struggling for the right words to say, no offence caused or taken. Much easier than in real life.

Hugo, hanging out in his incubator.

One year on, I am exhausted.

Grief is a heavy burden to bear. Getting up in the morning, putting one foot in front of the other. Finding my way in this new life, finding a new direction, things to feel positive about.

Fighting is exhausting.

Fighting those who were unable to accept that their response to my complaint about things that should not have happened was unacceptable, flippant. Having to meet with them, reliving the trauma, to help them understand.

Fighting to get the support I needed, through the treacle of a system so difficult to navigate, professionals with no idea of what to do with me, who told me ‘God will give me another baby’, and in one letter described me as ‘having trouble getting over the loss of her dead baby, Hugo’. While trying to get a satisfactory resolution to a complaint receiving emails from a senior professional that contained content so obtuse they were farcical.

Fighting the urge to respond premature baby success stories that say all you need is hope and love. Fighting the urge to write, in capital letters: “Nonsense! If that was the case a bouncing baby Hugo would now be in my arms!”

Always fighting.

So often upset.

Upset caused by an organisation that should know better. A survey about premature babies’ involvement in clinical trials that asked questions assuming only a positive outcome. The staff failing to appreciate not all babies survive.

Trying to remember the upset is usually unintentional. The upset is caused through lack of thought. Usually.

Exhausted by pointing out, often, what should be blindingly obvious if only people thought a little harder. Had more compassion, empathy. Were a little more human.

Exhausted because of being fuelled by anger and frustration at things that should have been done better, still should be done better. Why don’t people get it?

My life does not look how it should. Anger at the world, at the injustice, at specific people and processes for being utterly inept.

One year on, I have had enough of the life of a bereaved mother. Irrespective of whether Hugo has any little brothers or sisters, there will always be one child missing.

Stop the world, I want to get off. But I know that is not possible. This is my life.

Hugo enjoying a cuddle with me.

So what do I do?

Channelling, again, the wise words of Yoda:

Fear leads to anger

Anger leads to hate

Hate leads to suffering.

Being in a constant state of anger, frustration and hatred is not good for me. It leads to suffering.

My work making a difference to other families in Hugo’s memory will not stop, cannot stop. But I need to ease up. Try to look at things differently.

At the weekend I watched Cinderella at the cinema. Her mantra is ‘Have courage, be kind’.

Courage I have in plentiful supply. Particularly when it comes to fighting, as I have discovered. Kindness towards others comes fairly easily to me (unless you are one of the people I am fighting – but even then I fight with words, eloquent emotion rather than actual fighting).

Kindness towards myself is something to work on. Self-compassion. Giving myself a break. Knowing when to ease off.

My life is changed completely, utterly, irrevocably. One year on, I am exhausted by it all.

I have courage I need it not only for the fighting, but for the future too. Kindness towards others – because kindness is best, and right – towards myself as well as others.

This is forever.