Hugo's Enduring Legacy

Last Thursday saw Martin and I take a trip to St Pancras and all the way down the Northern Line to St George’s Hospital. There were a few things we needed to do and see to make the four hour round trip worthwhile: an appointment with my consultant, and see the tangible products of Hugo’s enduring legacy.

Hugo

Hugo

Advice for other parents

When Hugo was born, we were given a pile of booklets about premature babies from Bliss and Tommy’s. A great deal of time, effort and thought has obviously been put in to these well-produced books. They are incredibly detailed, with every possible condition and complication a premature baby can experience – a bit too detailed.

I can remember sitting in my bed in the postnatal ward during one of my rest times trying to read one of the books and feeling so overwhelmed I was wracked with sobs – a lovely midwife came and gave me a hug. The book became connected with trauma, which I’d had quite enough of by that point. I was also just too exhausted and with a brain fogged by all the medication I was on to concentrate or take anything in – as are all new mums of a preemie, whether or not they have been ill.

There are parents who read these books cover to cover, but effective health communication needs to meet different individuals’ different needs. I wrote the post Advice for Neonatal Mummies (and daddies) based on things I wished I had known at the time, and things I learnt the hard way. So, we hoped a poster with a few pointers would be helpful to other parents – sowing seeds of knowledge in their fatigued minds. With the family care coordinator’s help we turned it in to a poster for display in the parents’ room. The parents’ room is well-used when a break is needed, and parents are a captive audience in there during shift changes and doctors’ rounds.

It was heartening to see the poster on display: an idea come to fruition, and helping even more people in Hugo’s name.

Poster giving advice for parents in a neonatal unit

The poster

 

Hugo’s story on the board

While Hugo was being cared for in the hospital’s neonatal unit, Martin and I spent time reading every single story on the board in the corridor. At that time, all but one of the stories told the tales of babies who had gone home with their grateful parents. Many of these babies were preemies who had seemingly ticked off every possible complication and defied the odds. Some of these were cared for 10 or 15 years ago, with less advanced medical technologies. Others were term babies who were sick, or needed complicated operations.

These success stories gave us such hope during Hugo’s life. Hugo ‘only’ had his size, prematurity and his lung problems to contend with, compared to the infections, brain bleeds, and bowel problems common amongst other preemies.

That meant that during those most awful, raw days immediately after Hugo’s death I tortured myself with thoughts that we had given up on Hugo too quickly, that surely there was more we could have done for him. That I had let him down.

What we did not realise at the time was, of course, that Hugo’s few issues were devastating for him, meaning it was difficult to compare him with another baby’s many issues, as serious as those issues were to the other individual babies.

The board was full of success stories because only one family of a baby who had sadly died had sent in their baby’s story, not because of wanting to project a one-sided story. With the unit’s encouragement – they want a better balance of stories on the board for the benefit of parents like us – I wrote Hugo’s story: why he was born so prematurely; what he was like, with his feisty personality; the skin-to-skin cuddles we enjoyed; my expressed breast milk that he liked to guzzle up; why and how Hugo died. I included photos too.

Martin and I were pleased to see that Hugo’s story was in a prominent position on the board. Seeing his story on the board was an emotional moment – I so wanted his success story to be on that board, and during his life had even written it in my head. I so wanted Hugo’s story to have a different ending.

Story of a premature baby on a neonatal unit

Hugo’s story on the wall – it’s a terrible image because of the light, and glare from the noticeboard screen.

 

Ronald McDonald House

Martin and I were incredibly fortunate to be able to stay at the Ronald McDonald House in Tooting during Hugo’s life. The house is on the same site as the hospital, meaning we were never more than a few minutes away from our baby. It’s free for parents to stay in for as long as is needed. It really was invaluable for us – it saved a daily four hour round trip (which would have been unrealistic), or spending a fortune on accommodation.

The houses are built and furnished by the central Ronald McDonald House charity, but each house is then responsible for fundraising for their individual house’s upkeep. We raised £1,000 from the collection at Hugo’s funeral, split equally between First Touch, the neonatal unit’s charity (Hugo’s money bought an oximeter) and the Tooting House. It costs £25 a night for a family to stay, meaning the money raised in Hugo’s name will help a family, or families, stay closer to their sick child for 20 nights.

The house installed a plaque for Hugo in recognition of the fundraising efforts made in Hugo’s name. Martin and I are very proud to know that not only is Hugo’s legacy helping other mummies and daddies, but that there is also a permanent memorial to him at the house that was so precious to us during those five weeks.

Close-up of Hugo's plaque.

Close-up of Hugo’s plaque.

Hugo’s enduring legacy is a small comfort to Martin and I in the sorrow of our loss.

Martin and I next to Hugo's plaque.

Martin and I next to Hugo’s plaque.

 

0 comment on Hugo's Enduring Legacy

  1. kay clegg
    January 27, 2015 at 9:53 pm (2 years ago)

    Thanks for you kind words Leigh. I was touched when I saw first touch had mentioned millie . she has her angel wings and will never be forgotten.
    Hope you and your husband are well and you are coping with the loss of Hugo.

    Xxxxx

    Reply
    • Leigh Kendall
      January 28, 2015 at 3:35 pm (2 years ago)

      You are very welcome. We are putting one foot in front of the other, learning to live without Hugo. I hope your family is getting the support you need to grieve your Millie xxx

      Reply
  2. kay clegg
    December 24, 2014 at 12:56 pm (2 years ago)

    Hi Leigh I’m so sorry for your loss, Hugo.My grand daughter (Millie) was also at St Georges and sadly passed away last Wednesday (17th).
    The work everyone on the nnu is second to none and nothing was too much bother to them, any questions and they would happily give you an answer they gave my daughter and her partner so much support that it inspired them to raise money for the charity First Touch.
    They set up a giving page on Thurs (18th) and so far they have raised over £2000 in just 6 days in memory of Millie.
    The boards in nnu are vital for parents of prem babies and also their families to understand both sides of the spectrum.
    The hardest part is yet to come (her funeral) but knowing she is at peace is a comfort and we are thankful for the 5 days she was with us.

    God bless
    Kay

    Reply
    • Leigh Kendall
      December 26, 2014 at 10:56 am (2 years ago)

      I’m so sorry for the loss of Millie, Kay. I read about Millie on the First Touch Facebook page, and the amazing amount that had been raised in such a short period of time. The unit’s staff really are incredible, and I shall always be grateful to them for everything they did for Hugo. Sending you and your family love for these difficult days xxxx

      Reply
  3. carla
    December 16, 2014 at 10:54 am (2 years ago)

    It’s so wonderful that these charities exist for when support is needed. I couldn’t possibly imagine how you would feel if you had to travel daily to see Hugo. I know the next few weeks will be hard for you and your husband but I have a very strong feeling that together you will get through it
    Xxxx

    Reply
    • Leigh Kendall
      December 16, 2014 at 5:28 pm (2 years ago)

      Thanks Carla, having to travel to St George’s daily to see Hugo really doesn’t bear thinking about, so I’ll always be grateful to Ronald McDonald House. Thank you for your kind words. We aren’t looking forward to Christmas, but we have survived worse this year xxx

      Reply
      • carla
        December 16, 2014 at 5:31 pm (2 years ago)

        You have had the worst year but do I hope that together you will be able to enjoy some parts of the festive season but it’s completely understandable that it will be difficult xxxx

        Reply
  4. mummyshambles
    December 16, 2014 at 7:56 am (2 years ago)

    You’ve done an amazing thing and you should be proud of yourself. A wonderful legacy in the memory of a beautiful little boy. I have always liked the phrase “Be the change” and you are a good example of that. So much admiration for you, lovely. X

    Reply
    • Leigh Kendall
      December 16, 2014 at 5:27 pm (2 years ago)

      Yes – I’ve always been one of those people to say “if you don’t like something, change it”. I’m glad I have been able to use my skills to help others in Hugo’s name. Thank you for your kind words xxx

      Reply
  5. Tara
    December 15, 2014 at 7:07 pm (2 years ago)

    You should be very proud. I am sure at times you just wanted to shut yourselves away but instead you’ve done so many amazing things. And each and every one will, I am sure, make a difference.

    Also, you look lovely in purple 🙂

    Reply
    • Leigh Kendall
      December 16, 2014 at 5:24 pm (2 years ago)

      Thank you Tara, it is a way of making a positive out of a terrible tragedy, and making sure Hugo is never forgotten.

      Purple is my favourite colour – thank you! xxx

      Reply

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