Technically, ‘legacy’ is my word of the fortnight. I wasn’t able to post last week because I was struck down by a vomiting bug. I shall spare you the gruesome details, but suffice to say I felt pretty rotten.
The past couple of weeks have seen some brilliant developments for Hugo’s Legacy. The timing is very poignant because it was this time last year my symptoms started, followed by an admission to hospital a couple of days later – and Hugo’s very premature birth.
In the order that they happened, the developments are:
A video about HELLP syndrome and pre-eclampsia
I told my story on film for a medical company that is developing a pre-eclampsia test. They wanted to demonstrate how serious these conditions are, and the devastating impact they can have. The company kindly said I could use the video on my blog, and I published it last week.
The issue is so important to me – I had not heard of HELLP syndrome before being diagnosed, and did not know pre-eclampsia could strike so early in pregnancy. I paid a few pounds to boost the post on Facebook, and was astonished at the reach of the post. Women who had experienced pre-eclampsia and HELLP syndrome got in touch to tell their own stories – tragically some of them had lost their own babies to these dreadful conditions. The HELLP syndrome survivors in particular are united in wanting more awareness – not having heard of the illness adds to the trauma.
I am heartbroken that Hugo is not here with us, but know I am lucky to be here. Raising awareness will hopefully save a mother or a baby’s life.
Please take a few minutes to watch the film if you haven’t already watched it, and share it with everyone you know!
Another part of Hugo’s Legacy is helping improve mothers’ experience of maternity services, especially mums who have birth trauma and/or whose baby is cared for in a neonatal unit. Our overstretched maternity services do their best, but more needs to be done to meet the specific needs of these mums. I have been involved in a movement called #MatExp, and last week went to an engagement event in London. It was an inspiring event, and it is brilliant to be part of something that will help make a real change to other women’s maternity experiences.
#MatExp is open to everyone – mums, dads – anyone who has an opinion about maternity services. People who have had a negative experience of maternity services are especially welcome; these situations give the best learning for staff. If you are on Twitter, look for the #MatExp hashtag.
Information Card for Bereaved Parents
When Hugo died, we were given a pile of leaflets that we didn’t read. Not only were they too much, and too wordy (my head was spinning, I couldn’t take in more than a sentence at a time), I found the tone of them to be what I call ‘unicorns farting rainbows’ – grief is ugly, and we need to be upfront about that.
Feeling certain I was not the only bereaved parent to feel this way, I designed a simple card for the neonatal unit at St George’s Hospital (where Hugo was cared for). The card is small enough to slip in to a purse of wallet. It contains some simple points about how parents are likely to feel, advice on things to say and do, and web addresses/phone numbers of useful organisations. I hope the card helps reassure parents that their feelings are understandable, and that they are not going mad (that’s how I felt at first).
The cards have recently been signed off at St George’s and will be printed soon.
Hugo’s First Birthday Fundraising
Quality information for neonatal unit parents is vital – the neonatal unit is bewildering and alien. Mums and dads need to understand what is happening with their baby, and how they can get involved. When Hugo was born, we were given a huge stash of leaflets that were left unread because they were too much for our knackered and stressed brains to take in.
First Touch, the charity for the unit at St George’s, has been fundraising for portable DVD players for parents to watch information DVDs without having to leave their baby’s side. We set up a JustGiving page, and in less than 24 hours raised enough to buy three players, meaning the charity now has enough funds for all the machines that are needed. Once again, we have been humbled by people’s kindness.
Money left over from Hugo’s first birthday fundraising will go towards other projects for First Touch – there are always things to buy for these babies!
It is Hugo’s first birthday next Friday, February 20. The day will be a difficult one, but Martin and I will be doing our best to celebrate our son, everything he means to us and to so many other people. We would love to see #HugosLegacy trending on Twitter – it would mean the world to us if you would help.