During planning for last year’s Change Day, 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 Bedford Hospital for further tests.
Not long after my arrival I was diagnosed with pre-eclampsia, and 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 St George’s Hospital in south London by emergency ambulance. St George’s is a specialist hospital, and 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.
I was an in-patient for two weeks, and during that time I tweeted my NHS Change Day pledge: to raise awareness of HELLP syndrome. Hugo and I appeared in the booklet. Thankfully HELLP is rare, but so few people have heard of it and the symptoms can be easily mistaken for the expected pregnancy complaints, so it is vital that more people know about it – it is better to be safe than sorry.
I achieved my pledge through blogging: I have written several posts about it at http://headspace-perspective.com, and have promoted my posts through social media. Cumulatively, my posts about HELLP syndrome have had around 10,000 views since April 2014, meaning a minimum of that number of people know now about the condition.
My blog contains a range of posts about birth trauma, baby loss, and coping with grief. Bereaved parents thank me for my openness, talking about these still very taboo subjects, while people who have not been bereaved have said they are grateful to know better ways of talking to bereaved parents about their loss, as a result of reading my blog.
Working in hospital communications, my experiences as a patient and as a parent were fascinating. There is nothing that could have been done differently clinically in either Hugo’s or my care: everything possible was done. However, there were incidences where better communication could have reduced stresses – or avoided them completely. I set up an organisation called Bright in Mind and Spirit (it is what Hugo’s name means), which is aimed at raising healthcare professionals’ awareness of the importance of effective communication.
To date, I have given talks at bereavement events at two hospitals, and at the charity Bliss. I have also written guest posts about related issues for a variety of websites including the Royal College of Midwives.
I continue to raise awareness of all these issues through my blog, and on Twitter under the hashtag #HugosLegacy. This is my way of making sure my precious boy lives on through my work and my writing.
I’d suggest that anyone who would like to do similar work just get on and do it. In the digital age, we have so many tools at our disposal with blogging and social media. Twitter makes networking so easy.