Connecting through the worst times with social media

I’m usually a stoical under-sharer, in personal relationships and especially on social media. However, events prompted by the premature arrival of my son Hugo led to sharing so much more of my life than I ever thought possible – and I am so grateful for the support and bonds with both friends and complete strangers that came as a result of my openness.

I vividly remember lying in my bed in the delivery-suite-that-could-become-an-emergency-theatre at Bedford Hospital during the night I was admitted. I’d spent the whole night sobbing because I thought I would have to deliver my baby that night, at just 24+1.

By about 5am, I decided upon a plan. The worst had not yet happened, but it was only a matter of time. I had pre-eclampsia and HELLP syndrome and the only cure is to deliver the baby, irrespective of the gestation. So, I knew I would need all the help I could get.

Hugo, Martin and me

Hugo, Martin and me

Both my partner, Martin and I got out our phones and posted messages on Twitter and on Facebook explaining what had happened. We were overwhelmed by the messages of support we received from family and friends from all over the world. They all pledged their prayers and positive thoughts for us, our unborn baby and a happy outcome.

Two days later, I was transferred to St George’s Hospital in London for specialist treatment. Thankfully, I was still pregnant at the time, my stats having stabilised for the time being.

Hugo was born the following morning and taken to the hospital’s neonatal unit, where he fought so hard for life for the next 35 days.

Not only were we were a long way from home, but having such a tiny, vulnerable baby in a neonatal unit meant that visitors had to be limited. We shared so many moments of our time in the unit with our family and friends through social media, instead. Photos and videos were posted, as well as stories about our son’s antics in his incubator. Hugo was a real little boy, with a very determined character, so there were lots of stories to tell.

In addition, Martin and were I very proud new parents and loved being able to share with the world our incredible little boy, who seemed to be defying so many odds.  People clearly loved reading about Hugo and his spirit, strength and determination. There were cheers when we mentioned a good day or point of progress, and people willed Hugo to be strong when we had received some bad news. We loved reading all the comments and messages of support, and we read them aloud to Hugo, too.

Those comments and messages of support really did help keep us going. As any parent who has shared a similar experience will attest, the experience is utterly exhausting and can at times feel quite isolating. The support we received meant we knew people were always thinking of the three of us, and we never felt like we were alone. It gave us a real boost, and means more to us than we can ever express.

A spaniel wearing socks.

A spaniel, wearing socks.

Their support made us smile, too. We have a number of dog friends on Twitter. Their humans took photos of them wearing hats, in honour of Hugo’s little hat with the teddy bear button, wellies, socks and other items of clothing to demonstrate their encouragement for Hugo’s progress, as well as give his mum and dad a giggle and a bit of light relief.

Posting news on social media also had a practical benefit: it meant we could keep everyone updated in one go, rather than repeating the same story several times to all interested parties. It meant we could dedicate more of our limited energies to our son.

The assistance we received from complete strangers astonished us. Thanks to Facebook’s rather dodgy ‘privacy’ settings, friends of friends are able to read comments left on others’ statuses. Two mums of babies who had spent time on an NNU saw these comments and as a result felt compelled to get in touch to offer advice and a friendly ear from someone who ‘gets it’. One of those women is a family friend who I haven’t seen for nearly 30 years, and the other I haven’t ever met. I am so grateful to both of them for their help during some of my darkest days.

Strangers even got in touch through Facebook after Hugo’s sad death to say how sorry they were that he lost his fight. They said they had been following his story through mutual friends’ comments, and had been willing him on.

So many people’s comments said that our experience, and in particular Hugo’s fight had made them reflect on their own lives and families. In our sadness, it was incredible to think that our little man had touched the lives of so many people from across the globe - some people we see regularly, some we hadn’t seen for a long time and some we had never even met.

It made us realise that there really is no footprint too small to make an impact on the world.

The NHS Change Day booklet

The NHS Change Day booklet

My tweets and NHS Change Day pledge to raise awareness of the rare illness that necessitated very Hugo’s premature birth also got us both a mention in the booklet about the event. I was really proud that it meant even more people would know about Hugo.

Since Hugo’s death, writing these blogs has offered me a valuable form of therapy. I never imagined so many people would read them, or that they would spread so far. They have offered me even more support, in ways I had never envisaged.

Hugo’s Story has been shared all across the world through social media and read by literally thousands of people. I’m more proud than I can say that so many people know about my amazing son. Like any proud new mum, I wanted to show off my son to the world – I just never expected to have to do it that way, but I am glad that method is available.

The blog and social media has also assisted me in raising awareness about HELLP syndrome - and achieve my Change Day pledge. Again, literally thousands have read and shared it, meaning so many more women are aware of this very rare but very dangerous condition that too many people have never heard of. I hope this knowledge will help save lives, in Hugo’s memory.

Many kind people, mainly strangers, have taken the time to comment on my blogs. Some have also lost a baby and wanted to share their own experiences, while others just wanted to say how much my writing had touched them. I am very grateful to them all.

Hugo, wearing the hat with the cute teddy bear button.

Hugo, wearing the hat with the cute teddy bear button.

The blogs have also helped me find new friends through Twitter – lovely people some of whom are also bereaved mothers, some have had pre-eclampsia, others have had a baby in an NNU and others are interested in our experiences, and in helping us.

All of these people have been invaluable in showing me that while the journey of grief is long and difficult, there is light at the end of the tunnel. Again, it is those people who have been through it, and who ‘get it’ that you might not have been able to make the connection with if not for the existence of social media.

Not everyone will want to share their experiences so publicly. However, everyone can benefit from a friend in a time of need, whether it’s a phone call, text or an email (or a private message on a social media site). It’s also important for patients to be able to have access to all the information they need about their (or their child’s) condition, and many people these days will take to the internet to look things up.

The morale you get from your family and friends during these difficult times, as well as a sense of empowerment from having all the information you need can be just as good as any medicine. That’s why I think free wifi should be available on all hospital wards for patients (or their parents, in the case of babies and young children).

I am so glad I took the decision early that morning to share my most personal news with my family and friends. I will never have the right words to properly articulate how grateful we are for your love, kindness, and generosity you all expressed through your comments during Hugo’s good days, his bad days, and then the darkest days of our infinite grief and sadness.

It can sometimes seem too much to keep in touch with and see you all at the moment, but please know we know you are there, and how much we love and appreciate you.

All I can say is, from the bottom of my heart, and from the three of us: thank you.

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