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

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.

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.

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.

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They Learn of You Through Me

They are learning of you through me. So few people got to meet you, Hugo. The 35 days of your life were spent in an incubator, in a hospital away from our home town.

I write so people know what a special boy you were, and are, Hugo. You might only have lived for only 35 days, but you have made an impact on the world. Your legacy lives on. People from all over the world know about you because I write about you.

I so wish it was not so. That no one knew about you, me, us. Just another anonymous new mum and baby. This mum being too tired looking after you to even think about writing.

I want the world to know about you, Hugo. That you lived, that you MATTERED. And continue to matter. About my love for you, Hugo, about my fierce, burning love for you. There is no love like a mother’s love.

HugoMatters

Writing about you makes me cry. It makes other people cry, too. I talk about you to other people. They say how my face lights up when I talk about your antics. They can see how much I love you. It is because of this they know how strong you were, how much you fought, and liked to be naughty, even though you weighed less than a pound. They say they can see from the way I look at my feet and my voice goes quiet when I talk about the horrid parts how my heart is broken.

People say they think of you when they see stars, Hugo. They have become ‘Hugo stars’. I see visions of you everywhere, and so do other people. It makes my heart sing that others think of you, Hugo. It makes my heart sad. I am glad that people love you even though they didn’t get a chance to meet you, but I wish stars were just stars.

But these stars, the significance they have to me, to other people, these Hugo stars, they tell the world that you lived, that you mattered, that you continue to matter, that we love you, that we miss you, and that you live on through these twinkling, sparkling stars, my darling.

SeestarsHugo

Karma and Luck

Karma is something I used to believe in.

“What goes around, comes around,” right?

Karma is supposed to mean that bad things happen to people because they have done bad things. Getting their just desserts, if you like.

This concept is something I have struggled with since Hugo was born, and even more since he died. What happened to me was so rare. Our baby dying was unthinkable. Surely it must have been because I am a bad person?

Such thoughts have plagued me, as well as guilt. For a long time, I thought it was my fault.

I tormented myself, punished myself.

Seeing the group of mums and prams at the café in the local park this morning gave me a heavy heart. When I was pregnant, I was looking forward to those groups. Am I unable to join them because I am a bad person?

Of course not.

I threw myself in to writing, and Hugo’s Legacy. A way of proving to myself that I deserved to still be here. A means of avoiding thinking the darkest thoughts.

I have had to tell myself that my blog traffic does not in any way correlate to my worth as a person.

I have had to remind myself that while Hugo’s Legacy is a reflection of my love for Hugo, what it achieves, or how quickly does not correspond to how much I love him. Rome wasn’t built in a day and all that.

I know, rationally, that what happened is not my fault. HELLP syndrome and preeclampsia are entirely arbitrary. It is bad luck that it happened to me. It is especially bad luck that it happened to me so early in my pregnancy.

‘Luck’ – there is a fanciful term. Chance. The roll of a dice that meant my chemical pathology reacted with the workings of the placenta that meant my pregnancy nearly killed me, and it killed my baby boy.

What happened is not a sign that I needed to be knocked down so I could come back stronger, or any similar well-intentioned quote about grief.

I did not need this to happen. I did not deserve it. Nor did Martin, or Hugo.

I am a good person, loving, compassionate, generous, and kind.

What happened is nothing to do with karma.

There are times when life doesn’t work out the way you want to. Sometimes, with tragic consequences. We are not all dealt an equal hand. Life is not fair.

That doesn’t mean I accept it, or feel sanguine about it. It sucks, I hate it, I rage at it.

But I have to find a way to live with it. My bad luck.

A friend posted this on Facebook this morning. A quote that spoke to me:

Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am also brave and worthy of love and belonging.

(Brené Brown, The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be  and Embrace Who You Are).

I am brave, and worthy of love and belonging. I will try to remember that. I will continue to be a good person, not from fear of karma, but because it is the right thing to do.

What goes around doesn’t always come around.

 

Everyone Should Know About Pre-Eclampsia and HELLP Syndrome

Pre-eclampsia and HELLP syndrome are life-threatening conditions that can happen in pregnancy. Thankfully they are rare, but they can and do kill women and babies. These illnesses nearly killed me, and they took the life of my much-loved baby son.

I say this not to scare people, pregnant women especially. Pregnant women have enough to stress about. The trouble is, there is not enough awareness about these conditions, or their symptoms.

The issue is close to my heart because I had pre-eclampsia and HELLP syndrome in February 2014, when I was just 24 weeks’ pregnant. I thought I was very knowledgeable about pregnancy, but I did not think pre-eclampsia could strike so early, and I had never heard of HELLP syndrome before.

The only cure is for the baby to be born. My son Hugo was born by emergency Caesarean section when I was 24 weeks and four days pregnant. Sadly, he was too small, and premature, and died when he was 35 days old.

Since Hugo’s death I have raising awareness of these conditions. The video below was made for Roche, a medical testing and screening company who is launching a new pre-eclampsia test. They were looking for a bereaved parent to tell their story to demonstrate the devastating impact the condition can have.

Please take a few minutes out of your day to watch this video, and find out just how serious pre-eclampsia and HELLP syndrome are (more information about our story is below the video link).

I have produced this post to be shared – please do share it with whomever would find it useful (ie everyone!).

In case you haven’t heard of HELLP syndrome before, this is what it stands for:

  • ‘H’ is for haemolysis – this is where the red blood cells in the blood break down
  • ‘EL’ is for elevated liver enzymes (proteins) – a high number of enzymes in the liver is a sign of liver damage
  • ‘LP’ is for low platelet count – platelets are cells in the blood that help it to clot.

The symptoms of pre-eclampsia and HELLP syndrome include:

  • 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

Women may not necessarily have all of these symptoms. Another symptom is high blood pressure and protein in your urine. These are checked during your routine midwife appointments, which is why it is crucial that you attend them.

If you are at all worried about anything during pregnancy, or if something ‘just doesn’t feel right’, call your midwife, or GP. Your midwife or GP shouldn’t mind, and if they do – insist.

If, in the rare event you do have pre-eclampsia or HELLP, the earlier it is diagnosed, the earlier it can be treated. This means you will get better quicker, and it could help your baby too.

_______________________________

Background to my story

The video has been heavily edited; I spoke for about 30 minutes and with the best will in the world, few of you will have the time to sit and watch a video that is that long.

To flesh out the story and give a bit more context, my pregnancy was completely normal until around 23 weeks. I developed what I thought was heartburn, gained weight, was breathless, and felt very emotional. These can be routine pregnancy ailments, and I thought I would just have to put up with them.

How wrong I was.

I shall be forever grateful that I had a routine midwife appointment a few days after the symptoms appeared. I was sent straight to my local hospital, where I was diagnosed with severe preeclampsia and HELLP syndrome. I was stabilised, and two days later I was sent to a specialist hospital two hours away from home because I was so ill and our baby so premature.

Hugo was born the day after we arrived by Caesarean section. The team that was looking after me was concerned that my condition was deteriorating, threatening the lives of both me and my baby (I later discovered I was on the brink of multiple organ failure). I was put under a general anaesthetic. My partner Martin had to wait outside theatre, terrified that he was going to lose us both.

Our son was born, tiny but fighting. He was taken to the neonatal intensive care ward, and I to the adult general intensive care ward. It was about 30 hours before I was able to see Hugo because I was too sick to be taken to him, and he was too sick to be taken to me. When I met Hugo, the consultant encouraged me to put my hands in the incubator and he gripped my finger. It was the best moment ever.

Hugo did not have the brain or bowel problems the neonatologists warned us about before Hugo was born. However, his lungs were in bad shape and when he was three weeks old he was diagnosed with chronic lung disease. Every possible treatment was tried, but failed. Our feisty boy (nicknamed Hugo Boss by his nurses) tried so hard to come home with us.

Sadly, on March 27 2014, the doctors said all options had been exhausted. Hugo himself told us he had had enough, and he died in my arms later that day. He was 35 days old.

The day after, Martin and I made the long journey back to our hometown, empty handed.

We are heartbroken, devastated, disconsolate. We love and miss our Star Boy so much.

Hugo’s Story and HELLP Syndrome 10 Months On give more information, if you are interested in reading more about our story.

 

 

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Grief is Everywhere

Grief is everywhere:

The cloud of grief veils everything, makes every day things feel like treacle, out of focus, not quite right.

Grief is everywhere – symbols of Hugo everywhere – stars of course. A comfort and a curse. In the butterflies, birds and bees. Nothing is what it is anymore, everything has a special symbolism, a special resonance.

Grief is everywhere, in new mums holding their new babies, proudly cuddling, not knowing the pain of grief.

Grief is everywhere, my innocence lost, even with a hundred more babies there will always be one missing. My first born.

Grief is everywhere, a cloak that envelopes me.

Grief is everywhere, looking over my shoulder, in my head, in my heart.

Grief is everywhere, tainting everything with guilt, with absence, with pain.

Grief is everywhere, swooping malevolently.

Grief is everywhere, in the beauty of nature.

Grief is everywhere, people trying to take pain away that they cannot.

Grief is everywhere, in the pain I need to feel.

Grief is in the loneliness, the hope.

Grief is everywhere, my baby is in the ground

My baby is in my head, in my heart, in my soul, forever. I love you, Hugo.