Hugo’s Legacy

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

Hugo

Hugo

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 found my experiences as a patient and as a parent 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.

My focus is related to 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.

In addition to Hugo’s Legacy, I’m proud to be one of the leaders of the Maternity Experience (#MatExp) campaign, identifying and sharing best practice among the nation’s maternity services.


My activities with Hugo’s Legacy and the Maternity Experience campaigns are mostly self-funded. Fortunately, some organisations refund my travel expenses but otherwise travel, attendance at conferences, hosting this website, and other related activities come out of my pocket.

If you would like to help me continue to help others (and there is no obligation), you can donate via this PayPal button

(or directly through PayPal to leighk77@hotmail.com).

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21 Comments on Hugo’s Legacy

  1. Silly Mummy
    May 27, 2015 at 2:28 pm (3 years ago)

    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.

    Reply
    • Leigh Kendall
      May 29, 2015 at 8:17 am (3 years ago)

      Thank you so much for taking the time to read about Hugo, and for your very kind comment xxx

      Reply
  2. Sarah M
    April 21, 2015 at 6:12 pm (3 years ago)

    After reading your story, I can relate to some of the things you said and felt. I too am a pre-eclampsia and HELLP Syndrome survivor. I went to a routine midwife appointment at 28 weeks and little did I know that morning when I left that my world was going to turn upside down. I had no visible symptoms and did not feel unwell at any point, that’s the scariest part. I went for a scan at 2.45 pm to find my baby was very much alive but had not grown for the last 4 weeks as my placenta was dysfunctional. My beautiful girl was born via emergency c-section under general anaesthetic at 3.04pm weighing 1lb 9oz. She is now 32 days old and being cared for in the Neonatal unit. While I cant relate to the loss of a child, I’m sure you will understand how critical and precious time is just now but I have every faith my girl will make it. I’m so sorry for your loss xxx

    Reply
    • Leigh Kendall
      April 22, 2015 at 8:21 am (3 years ago)

      I’m so sorry to hear that you have also been afflicted with pre-eclampsia and HELLP syndrome, Sarah. It truly is devastating, and turns your life upside down and inside out. Best wishes to you and your little girl. I do hope she makes it. Sending love. Thank you for taking the time to write your kind comment xxx

      Reply
  3. Hilary
    October 19, 2014 at 10:44 pm (3 years ago)

    What beautiful photographs of a gorgeous and brave little boy and his mummy. I am so sorry for your family’s enormous loss, Leigh – I can see how much you love him and how proud of him you are. My older sister died while my mom was giving birth to her, in 1967. There is a Julie-shaped hole in our family even though I never knew her. There are enough memories from my dad and enough desires and tears from my mom to make Julie very real to me and my younger sister, and I don’t think there was ever any question of erasing her existence from our family – we were just a family who had suffered the loss of a loved one. This website and Hugo’s Legacy is an amazing way to honour his life. I wish you strength and whatever love a stranger can offer to you to carry on with your project for him.

    Reply
    • Leigh Kendall
      October 31, 2014 at 3:38 pm (3 years ago)

      Thank you for your kind words about Hugo. I am sorry about the loss of your elder sister – it’s lovely your family made your sister very real to you, despite you never having met her xxx

      Reply
  4. Eleanor Johnson
    September 27, 2014 at 3:05 am (3 years ago)

    My daughter was borned early at 7mos. Stayed at Vanderbilt Childrens Hospital for a month and went through ups and downs ,Then sent bavk to Memorial hospital for one month..we were so blessed through good Drs. and Gods mercey .He allowed us to keep her .She is now 39 and has 3 sons.>But then when she was nine I was pregnant againHaving 2 older teen sons really wasnt planning on having anymorebut as each day went by we became more excited until one morning I got up and noticed a pink discharge. I was put on bed rest for 3 wks and it only got worse.I had sonograms which showed the baby was very active but it wasnt meant to be . .When finally I was in worse pain then any labor i had ever had the baby was gone.I cant tell you how bad the depression was.horrible,I had to get therapy.Even now as my husband has gone on as well at all our celebrations some one is always missing at the table. If you have a miscarriage dont be afraid to get help.Its natural to feel that way but dont go it alone.And lord knows the stupid things people will say to you
    …Overlook their stupidy.You feel as though your baby has been stolen.We buried ours by my mother.Dont let them keep it at the Hospital because they just do wht they want to with it and throw it in the incinerator..God Bless each one of you who have gone through losing a baby and God bless these people who come and do pictures.

    Reply
    • Leigh Kendall
      September 27, 2014 at 12:58 pm (3 years ago)

      Thank you for taking the time to read and comment. I’m so sorry for your loss. It’s an awful thing for any mother. Sending you strength xxx

      Reply
  5. Kate
    September 26, 2014 at 11:49 pm (3 years ago)

    I also lost my son, Jack, to preeclampsia and HELLP. We somehow were one of those odd cases that doctors never see of pree and HELLP developing before 20 weeks and had to induce his delivery at 20 weeks1day for my own health and safety. I’ll be keeping you in my thoughts and prayers during this difficult time.

    Reply
    • Leigh Kendall
      September 27, 2014 at 12:56 pm (3 years ago)

      I’m so sorry about your Jack. It’s so rare to get it so early – I’m so sorry. Preeclampsia and HELLP are utterly devastating. Sending love and hugs to you. xxx

      Reply
  6. Becky
    September 3, 2014 at 8:48 pm (3 years ago)

    I have just found your blog through the share with me linky and it has really touched me. i can’t imagine what you going through and helping others is so brave. My son was born at 34 weeks and the care I received afterwards was pretty dismal which then led to PND. The pictures of Hugo are lovely, Such a gorgeous boy! Your an inspiration! Becky xx

    Reply
    • Leigh Kendall
      September 4, 2014 at 8:04 am (3 years ago)

      I’m sorry to hear about your experiences. Hugo really is gorgeous, thank you! Thank you for taking the time to read about Hugo xxx

      Reply
  7. Emily Ambrose
    August 28, 2014 at 1:07 pm (3 years ago)

    Your story deeply touches me. I had a miscarriage last May and struggled getting over it and suffer with bad depression as well. I have two young cats who are very important to me and help to keep get me up in the mornings – one is actually called Hugo! I work in communications too but for the Police. Keep writing you are an inspiration!! xxxx

    Reply
    • Leigh Kendall
      August 28, 2014 at 1:24 pm (3 years ago)

      I’m sorry to hear about your miscarriage. Animals can really give us what we need when we’re down – lovely one of your cats is called Hugo. Thank you for taking the time to visit and comment xxx

      Reply
  8. kat
    August 9, 2014 at 6:03 pm (3 years ago)

    have come across your page from the butterfly awards , what an inspiration . xxx

    Reply
    • Leigh Kendall
      August 9, 2014 at 6:10 pm (3 years ago)

      Thank you so much for taking the time to read about Hugo’s legacy xxx

      Reply
  9. Kerrie McGiveron
    August 8, 2014 at 8:37 pm (3 years ago)

    I can’t imagine what you must have gone through and must still be going through. I am glad that you have found a way to channel your grief – you are amazingly strong, and have found an amazing way to make a legacy for baby Hugo. Sleep tight little one xxx

    Reply
    • Leigh Kendall
      August 8, 2014 at 8:45 pm (3 years ago)

      Thank you so much – Hugo’s legacy helps keep me going. Xxx

      Reply
    • Anne Sydney
      March 31, 2015 at 12:27 am (3 years ago)

      Hi my son in law found your site after we lost my grandson at 20 weeks. His mum and dad had just found it he was going to be a boy and they’d named him Hugo Josef, it gave me goosebumps when he told me about the Hugo legacy. I’m sorry you had to go through it, it was heartbreaking for us all( it was just last week). Luckily we have very supportive friends and family xx

      Reply
    • Anne Sydney
      March 31, 2015 at 12:29 am (3 years ago)

      Hi my son in law found your site after we lost my grandson at 20 weeks. His mum and dad had just found out he was going to be a boy and they’d named him Hugo Josef, it gave me goosebumps when he told me about the Hugo legacy. I’m sorry you had to go through it, it was heartbreaking for us all( it was just last week). Luckily we have very supportive friends and family xx

      Reply
      • Leigh Kendall
        March 31, 2015 at 9:20 am (3 years ago)

        I’m so sorry for the loss of your grandson Hugo Josef. A wonderful name. Please send my deepest sympathies to your daughter and son-in-law. It’s awful anyone has to go through this. Sending love to you all xxx

        Reply

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