by Leigh Kendall
I started 2014 as an excited expectant mother: now I am a survivor of a rare, life-threatening illness, and an empty-armed mother. My heart is broken, my hopes dashed, my dreams destroyed.
At the beginning of 2014 I was pregnant with my long-awaited first baby, who was due to be born in June. In mid-February, however, I started to feel unwell. The symptoms – weight gain, what I thought was heartburn, and breathlessness – were just normal pregnant ailments, I thought. My routine 24 week midwife appointment revealed some concerns, and I was sent to my local hospital for further tests.
Not long after my arrival I was diagnosed with severe pre-eclampsia, and severe HELLP syndrome. HELLP stands for Haemolysis, Elevated Liver Enzymes, and Low Platelets. Pre-eclampsia is relatively rare, HELLP syndrome even rarer, and it is rarer still to be affected so early in pregnancy. I did not know pre-eclampsia could arrive at such an early stage, and I had never heard of HELLP syndrome before.
Left untreated, both conditions are likely to result in the deaths of both mum and baby. The only cure is for the baby to be born. My partner and I were both utterly devastated – we knew the chances of our baby’s survival at that stage were slim.
Thankfully, my condition stabilised and I was taken to a specialist hospital better equipped to deal with my serious illness, and our very premature baby. Our son, Hugo, was born the day after I arrived, weighing just 420 grams. Hugo fought so hard. Sadly, he was too small, and premature. He died in my arms when he was 35 days old. I am utterly heartbroken at the death of my much- wanted, much-loved precious baby.
There is a reason bereaved parents identify as being members of an exclusive club that no one wants to join: our culture is uncomfortable with grief, and baby loss in particular is a taboo.
I have been the grateful recipient of much kindness from friends and family since Hugo died: people who know how much Hugo means to me, who are always willing to listen to my stories about him, and agree that he was a gorgeous baby. They make me feel included and accepted as a mummy.
However, there are many people who do not know what to say. You can see the look in their eyes, sense their awkwardness and their wish to be elsewhere. I understand that there are some who are frightened about saying the ‘wrong thing’, so prefer to say nothing at all. This is, of course, hurtful. I want to say to them their discomfort will last for a few moments, while my heartbreak will endure for the rest of my life. I love to talk about Hugo, but this has led to a reluctance to engage in conversation, especially with people who do not know Hugo’s story, for fear of their awkwardness or them saying the ‘wrong thing’ – I try to avoid additional upset in my life. The trouble with this is, of course, it adds to the sense of isolation.
I always want to say to people: just ask the baby’s name. Just think, it is what you would do if the same parent was out with their baby in their pram. That parent is just as proud of their baby, whether or not the baby is still with them.
Guilt has been a close companion to the sadness since Hugo died. Rationally, I know that pre-eclampsia and HELLP syndrome were not my fault – they are indiscriminate, and no one really knows what causes them – but I felt I had failed as a woman and as a mother, and in a spectacular fashion.
For many months after Hugo died, I wanted – needed to feel the pain of grief. The effort of carrying around the heavy weight of grief and maintaining a constant protective guard around myself was utterly exhausting. Gradually, the pain felt less acute and the protective guard eroded. There are times when I feel guilty for feeling less pain than before, for moving forward (not on, a crucial distinction) with my life.
However, I still carry the pain around with me, every single day. There is a Hugo-shaped hole in my heart, and there always will be. His photo retains the power to fill me with love, pride, and so much sorrow all at the same time.
Instead of watching my son grow, I nurture Hugo’s legacy. I keep his memory alive, make sure the world know he matters through raising awareness of HELLP syndrome, premature babies, and baby loss. It is a small comfort to know other parents can be helped in Hugo’s name.
Leigh Kendall blogs at Headspace Perspective about life after the death of her baby son Hugo. Hugo was born in 2014 when she was just 24 weeks’ pregnant because she had the rare, life-threatening pregnancy illnesses pre-eclampsia and HELLP syndrome.
Since Hugo’s death, she has been raising awareness of HELLP syndrome, premature babies, and baby loss. She calls it Hugo’s Legacy. Leigh has worked as a Communications Manager in the UK health service for the past seven years. Her experiences as a patient were fascinating; while nothing could have changed the outcome, there were several incidences where better communication could have made events a bit less stressful.
To that end, she set up Bright in Mind and Spirit, which seeks to promote the importance of effective health communication. She was named one of 50 Patient Leaders in 2015 for her work on Hugo’s Legacy.
You can find Leigh on Twitter and Facebook
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Her story sounds so similar to mine, which is rare with this disease. My thoughts and prayers to her.
Thank you, Tracy, I’m sorry to hear you had this awful disease. Love to you xx