Hugo’s Legacy

In February 2014 I was admitted to hospital at just 24 weeks’ pregnant with severe pre-eclampsia and severe HELLP syndrome, rare life-threatening conditions that occur only in pregnancy. The only cure is to deliver the baby. My son Hugo fought for life for 35 days. I am heartbroken.

I work in the NHS in communications. It’s a profession I am passionate about doing well, for the benefit of patients. I have a particular interest in communication between clinicians and patients, and in patient information.

In amongst the myriad of other emotions, I have found my experiences fascinating. Most of my experiences have been excellent, but there are several incidences where issues could have been avoided and stresses reduced if there had been better communication between health professionals, and between health professionals and me.

Good communication costs nothing, but can create a world of difference to a patient’s experience.

I would like to use my experiences to raise awareness of the importance of good communication between health professionals and between health professionals and patients. I would like to advocate for change, to improve services and to help others.

That’s why I have set up Bright in Mind and Spirit, in Hugo’s name. It’s what his name means. It’s Hugo’s legacy. Hugo was so full of spirit and determination, and I am aiming to emulate that through this organisation.

Hugo

My focus at the moment is on issues based on my own experience:

• Improve communication and information for parents whose baby is in a neonatal unit;
• Improve information and signposting for women who have suffered a traumatic end to their pregnancy;
• Improve information and signposting for parents whose baby or child has died.

The changes that are needed are often simple, but they can help make the worst times of our lives feel just a little bit easier by knowing what to expect, what to do, and who to turn to for help. The information needs to be produced in a way that is in plain language and easy to digest.

The logo has a very special significance. I am very proud of Hugo: he is my little star. Twinkle, Twinkle Little Star was one of the nursery rhymes I used to sing to Hugo when he was still in my bump, and he loved to boogie away to it when he was in his incubator. Each of the five stars represent a precious week of my son’s life.

Channelling my grief, anger and frustration into this project helps me find a way forward in my heartbreak. Helping other people in Hugo’s name helps me by thinking his life was not in vain, and that he will always be remembered.

I’m pleased to have worked with the neonatal unit at St George’s Hospital, London (where Hugo was cared for) about simplifying, improving and updating the information that is given to bereaved parents after their baby has died.