I don’t normally reply to blogs, but I really wanted to write to you to say thank-you for sharing your story. I am sorry for your loss your beautiful son Hugo.

I am lying in my hospital bed, 21 days after being diagnosed with HELLP syndrome . I spent 4 days in ICU in a coma and I am slowly recovering after acute renal failure. Although I survived, we sadly lost our baby son John William at 33weeks, our first child. My husband and I are absolutely heartbroken. Reading your blog has really helped me to come to terms with what has happened and made me feel less alone.

I had never heard of HELLP syndrome until the Drs explained it to me when I came to. I am still trying to understand it. I think you are doing an amazing job at spreading the word, something I would like to advocate also as a legacy to John.

I presented to hospital a week earlier with severe upper abdominal pain and vomiting. The doctors ran all the tests however, I was unfortunately misdiagnosed with indigestion, given a script for antacids and sent home with no further instructions. I had no further symptoms that week until I was rushed off to hospital again a week later with the same symptoms. Only this time I was diagnosed correctly, too late for our baby boy. I strongly believe that if the doctors had diagnosed me correctly the first time, John would have survived, or at least be given the chance to fight.

I am plagued with a range of emotions, most of which I couldn’t put into words until I read your blog. It was like you had taken the words out of my mouth. Thank-you from the bottom of my broken heart for being a voice for those of us who can’t speak. I know I have a long road ahead to heal. I lean on the reassurance that the pain, whilst doesn’t go away, will become less in time. I hang on to the hope that my husband and I will be able to have another child one day, one we can bring home with us.

I only hope that awareness of this awful disease improves so tragedies like this don’t happen to anyone else.

Email from Kate, Australia


Leigh Kendall, who writes Headspace Perspective, is a woman with whom I felt an instant connection when I met her briefly at a blogging conference last year. She has been through unimaginable loss her baby Hugo died a few days after he was born. In this vital post she reflects on the pain of living through the date of his first birthday and how she turned all that around with a Twitter campaign and raised huge amounts for charity First Touch too. She is a true inspiration and I am very proud to know her. You will be too. Please read Hugo’s First Birthday: Survived,
Hayley Goleniowska from Downs Side Up, BritMums SEND Round Up

as a funeral celebrant, I found this blog such a breath of fresh air filled with hope and comfort for others
People always ask me about officiating at Babies services, but it is here that I find the most amazing strength and love from others like never before

Donna Sparrow, comment left on my ‘Work with Me’ page


I am so sorry for the loss of your beautiful Hugo. I don’t pretend to be able to imagine what you are going through.

I followed a link on my Twitter feed about BritMums keynote, & have found myself reading through most of your site. Obviously, it is very sad reading, but your posts are also beautiful & informative & compelling. Hugo’s Legacy is a wonderful initiative. Both it and your blog stand as powerful testaments to Hugo’s memory & to you as a mother.

Silly Mummy, comment left on ‘Hugo’s Legacy’ page


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