The post brought a proud but bittersweet moment yesterday: first sight of the bereavement cards I helped create with the unit where Hugo was cared for.
The bereavement cards I designed for @StGeorgesTrust @FirstTouchNNU arrived today. Proud but bittersweet #HugosLegacy pic.twitter.com/0UXrlrZynl
— Leigh Kendall (@leighakendall) September 7, 2015
Returning home the day after Hugo died (we were in south London, two hours away from our home from the time I was admitted to hospital a couple of days before Hugo’s birth) I felt bereft for so many reasons.
First and foremost of course was the pain, heartbreak and sorrow related to hearing the worst-possible news about our precious boy the previous day. Savouring our final cuddles. Trying to be strong for my son so he could pass peacefully snuggled on my chest. A few hours later, placing him in a Moses basket and leaving him behind.
I had promised that I would not return home without Hugo, but there I was empty-handed.
The feeling of being bereft was compounded by feeling totally and utterly lost. For months I had been looking forward to becoming a mother, and every day for the previous month had focused around being with Hugo. I was now a mother with no child to care for. The strength of my emotions were terrifying, and I just did not know what to do with myself.
Unbeknownst to me, St George’s had provided some bereavement support information in the SANDS memory box we were given the evening Hugo died. Unfortunately it took me a good month or so to feel able to look in to the box to find them, and the booklets were so detailed and wordy so as to not be much use to a brain steeped in grief fog anyway.
During the intervening time I had spent hours Googling trying to find my own support, as I have described in other posts. I got in touch with the unit to express my thanks for everything the staff had done to save Hugo, and all the support they gave to Martin and me, and offered some feedback about various aspects of our care, including bereavement.
My idea was to create a fold-out card that could easily fit in to a purse or wallet containing basic information about how parents might feel; things to say and do; and useful phone numbers and websites. Brief, succinct information to help reassure parents they are not alone, that they are not going mad, and a little bit of gentle direction for getting through the awful, raw early days.
Fortunately the unit at St George’s is very receptive to feedback (unfortunately this is not always the case with organisations I have had dealings with), and I was invited by one of Hugo’s wonderful consultants to speak at their bereavement meeting.The preceding weeks had been so challenging the result was a bad case of verbal diarrhoea during the meeting, back with some of the few people who had met and who knew my son.
I’d created (Blue Peter style) a little prototype of the card and was delighted when it was agreed to take the idea forward and produce the cards. As it turns out, the consultant had been looking for a similar solution for some time.
‘Delighted’ may sound a strange word in such circumstances. Like anyone, I wish these cards were never, ever needed. But sadly not every baby can be saved, and anything that helps their heartbroken parents even a tiny bit is like gold.
‘Delighted’ was also how I felt because I had felt such guilt around Hugo’s very premature birth and then his death. Working on Hugo’s legacy – helping other families in his memory – gave me a sense of purpose, a reason to function everyday, a feeling that my life is worth having.
The unit’s brilliant charity First Touch funded production of the cards, and the lovely team worked really hard on the fiddly formatting to make it look professional.
The resulting cards have turned out really well. It is good to see the plan come to fruition – and the result of excellent teamwork. An exemplar of how parent/patient involvement should be!
Sharing the cards on social media received a brilliant response, with other trusts wanting to find out how to get some for their own units.
I am happy to share the wording (it is easier to do so on my site rather than emailing all who have asked): while the card was created for neonatal unit loss, the main body of the wording is generic so maternity units may be interested for families affected by stillbirth, too.
Indeed, with a few relevant tweaks any specialty may be able to translate the card for use with bereaved families.
Clearly trusts will need to produce the card with their own branding, and the content will be subject to each trust’s information governance processes.
Hospitals and related organisations are free to replicate the wording (and of course make trust-specific amendments). You can click on the images to enlarge them.
The only request I make is that you find space on the card to include #HugosLegacy. It is one of the ways this sad and proud mummy makes sure her son lives on.
Space on a card of such a size is of course limited, but a reference to the support of St George’s and First Touch in your trust documentation would be appreciated, too.
I would also love if you could share your own finished versions of the card with me so I can see how far Hugo’s Legacy has travelled.
If you would like any further information please do get in touch – email firstname.lastname@example.org.