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