Reading Through Hugo’s Legacy

Some of the funds raised in celebration of Hugo’s first birthday have enabled First Touch to buy some beautiful box sets of books for families to enjoy reading to their babies.

First Touch is the charity for sick and premature babies at St George’s Hospital, where my son was cared for.

Martin and I loved reading to Hugo in his incubator. Hugo loved it, too. Our son was comforted by the familiar sound of his parents’ voices in such an alien environment.

Reading to our boy gave us something constructive to do. As a parent of a premature baby, many hours were spent by our baby’s incubator, mostly feeling rather helpless. Reading stories to Hugo was something useful that we could do.

Mummy, Daddy, Hugo

We learnt that research had suggested that reading to your premature baby helps aid their brain development. So, with all these benefits to be gained from reading to Hugo, we read to him a lot.

Despite being told the reading material didn’t matter – it could be the newspaper, or the phone directory for all Hugo cared (his parents’ voices were more important to him than the content) – we preferred to read children’s books to him. It felt right, and to be able to do such a ‘normal’ task as a parent felt comforting in a world that had been turned upside down.

Both Martin and I are bookworms, and we’d bought some beautiful boxed sets of classic children’s stories for the baby we were expecting. The trouble was, they were at home two hours away (I’d been transferred from my local hospital in Bedford to St George’s in south London, a specialist hospital better equipped for how sick both Hugo and I were).

A lovely friend had sent us a copy of Guess How Much I Love You. It’s a beautiful story, and absolutely perfect for Hugo and me. I read it again and again and again. Improvisations were made, the pictures were described, and comments made about them. There were a few children’s books in the parents’ room for visiting siblings, and we read them until we were well and truly bored of them, too.

We especially enjoyed reading the couple of Mr Men books from the parents’ room, though.

One of my fondest memories is, ironically, from the day that Hugo died. After we had received the news that there was no more hope for Hugo, I had an epic three hour cuddle with him, skin-to-skin. Daddy sat close by, and read to us. One of Martin’s favourites was the Animal Bop, which is a numbers and counting book made fun through rhyme (Daddy loves numbers; Mummy, not so much). On that day, Martin somehow managed to make reading the book sound very silly, which made me laugh. Hugo liked that, too, and I remember him boogying and kicking his feet against me. It made us feel like we were a proper family, for a few precious moments.

Hugo was buried with a selection of favourite Mr Men books: Mr Strong, Mr Brave, Mr Happy, and Mr Tickle. Martin and I read them to Hugo before leaving them with him.

Books and some of the other treasures that help keep Hugo company.

The amount of money that was raised on the occasion of Hugo’s birthday exceeded our wildest expectations. There was lots of money over and above the original fundraising purpose (DVD players and headsets for information DVDs). While thinking about how the excess funds could be used in Hugo’s memory, I had a brainwave: to buy some box sets of classic children’s books for other parents to read to their babies. Hugo’s legacy could help other families enjoy such precious moments.

First Touch agreed. They ordered a box of Mr Men books, and the complete works of Beatrix Potter. There is a box each for the neonatal intensive care unit, which is where Hugo lived, and for the special care baby unit (they are part of the same ward, but in different units a short distance apart).

Mr Men and Beatrix Potter book box sets.

I would like to extend a HUGE thank you to everyone who has so generously donated to Hugo’s Legacy. The Just Giving page remains open. The money will continue to help sick and premature babies and their families, and we shall continue to keep you all up-to-date about how the funds raised are spent.

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

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.

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.

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.

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.

 

Hugo’s Legacy is helping other babies

For Hugo’s funeral we asked for floral tributes from close family only, with donations to our chosen charities: First Touch and Ronald McDonald House Tooting, from everyone else.

Flowers are always beautiful, but of course they have a limited life. Donations of money, in contrast, have the potential to help many other families, just as we had been helped by these wonderful charities during Hugo’s life.

Hugo

We were astounded by the generosity of our friends and family, raising £1000 which was split equally between the two causes.

Having the obsession common to many bereaved parents to make sure Hugo is never forgotten we ideally wanted the money donated to First Touch (the charity for the sick and premature babies at St George’s Hospital, where Hugo spent his life) to buy a piece of equipment, something tangible that we could say is Hugo’s.

At first, we thought the money wasn’t enough to buy a piece of equipment outright, so we were  going to put the money towards the refurbishment of the quiet room; we had spent a lot of time in there during the worst times, and it is in dire need of a bit of TLC!

We then received the news that Hugo’s money could buy an oximeter outright. An oximeter is a non-invasive way of measuring oxygen levels in the blood – one of the many vital observations sick and premature babies regularly need to monitor their progress. If you have had a sick or premature baby in hospital, or been an inpatient in hospital yourself you will appreciate how many observations and interventions the patient has over the course of a day, so anything that makes the process easier is invaluable.

‘Hugo’s’ oximeter.
As one of the lovely First Touch ladies observed, it is small but like Hugo, very important!

First Touch asked us what wording we would like on the plaque that was going to be placed on the oximeter. We asked that the nickname given to Hugo by his nurses – ‘The Boss’ – be added to reflect how much this tiny boy meant to everyone. ‘Bright in Mind and Spirit’ is what Hugo’s name means, and my feisty baby he really lived up to it, so that was added too.

The charity was kind enough to send some photos of the oximeter and plaque so I could share them with everyone so you know what your generous donations have bought, and how it is helping other babies like Hugo.

The plaque on the reverse of the oximeter

Hugo’s daddy and I are so proud that other babies are being helped in our little boy’s name.

It is also a way of showing how everyone’s support helps First Touch help sick and premature babies and their families. If you are looking for a good cause to support in 2015, please do consider First Touch. While the unit is based at St George’s Hospital, south London, they look after babies from all over the country like my Hugo, as well as little ones from the local area.

Hugo’s Legacy: Fundraising for First Touch

Hugo’s legacy grew still further at the weekend with an event fundraising for First Touch, the charity for sick and premature babies at St George’s Hospital.

My wonderful friend Louise hosted a Jamie at Home evening. For the uninitiated, a Jamie at Home party gives attendees the opportunity to browse and purchase Jamie Oliver kitchen and homeware products – not to mention catch up with friends and drink lots of wine.

Some of the Jamie at Home products

Louise wanted the event to raise money for First Touch because it supports the neonatal unit where Hugo was cared for. It is a fantastic charity, supporting the unit by providing state-of-the-art equipment that is out of the scope of NHS funds, as well as things to make parents’ lives a bit more comfortable while they are caring for their babies.

Money was raised via a raffle, with some amazing prizes generously donated by family and friends. They included a beautiful tagine, chocolates, a pet photography session, an M&S hamper, and other covetables.

Raffle prizes (the photos of Hugo weren’t in the raffle, they were there to illustrate the importance of the cause).

The party was a full house, and the guests generously dug deep buying raffle tickets.

I was moved by a guest who had won the host’s commission points but donated them to First Touch – I have ordered a few goodies for the charity to raffle – I’ll drop them off on my next visit to Tooting.

It was a fun evening. I didn’t know many of the guests and while they enjoyed the wine and chat, I am humbled and grateful to them for giving up their Friday evening, giving so generously to the raffle (whether by donating prizes or by buying tickets). More than £200 was raised. You are all helping tiny babies and their families – thank you.

Me and Louise

An extra special thank you is due to Louise for her dedication to raising money for First Touch. I had a fright when I added up how long we have known each other: 28 years – blimey. Yes, dear readers, I know you are wondering how that could be possible when neither of us look a day over 25!

If you or the company you work for are looking for a worthy charity to fundraise for, please do consider First Touch. They do a fantastic job supporting the tiniest babies and their parents at such a terrifying time. It doesn’t matter if you are not local to Tooting, either: we’re not, living two hours’ drive away. The specialist hospital cares for many families from around the country, just like us. We are pleased to be able to help to give something back.

Louise with Hugo’s Mummy and Daddy