Martin and I paid a visit to St George’s Hospital yesterday. This is the hospital where our son Hugo was born, cared for and sadly died. The visit was an important part of helping us manage our grief about our tragic loss – and making sure our son is remembered through donations to the charities who supported us during those very difficult weeks.
The main purpose of the visit was an appointment with the consultant who was in charge on the day Hugo died. The appointment was an opportunity to ask questions about Hugo’s care; there was far too much to take in at the time, and it was good to fill in some of the gaps and understand a bit more about what happened during his life, and why.
While we remain utterly heartbroken and wish more than anything that Hugo could have been one of the success stories, it is reassuring to know that everything that could be done was done, and that Hugo was given every chance to fight for life.
The consultant was also keen to make sure that Martin and I have all the support we feel we need to get through our bereavement. We feel very fortunate to have been involved with a neonatal unit staffed by people with such infinite kindness and compassion.
We also bumped into one of Hugo’s nurses, who was delighted to see us gave us both big hugs. She very happily told us all her favourite Hugo stories - and as he was a tiny boy with a huge personality, there are a lot of tales. The stories included how the normally active Hugo would actually stay still so a cannula could be inserted, but only for an agreed amount of time; how the feisty baby would kick off unwanted blankets when he got too hot; how my clever baby would find a way of telling his nurse what he wanted, such as a nappy change; and how the cheeky boy would pull on his wires, and wriggle out of his nest.
Martin and I have spent so many days during the weeks since Hugo died totally engrossed in our grief about everything we have lost, and everything that should have been. That’s an integral part of grief, and an unavoidable part of the journey.
Being able to talk about our son with staff who knew Hugo so well and so clearly cared for him nearly as much as we did was a lovely experience. It helped us return, if only for a short time, to the feeling of being very proud parents to a very special little boy – as well as being bereaved ones.
In lieu of flowers at Hugo’s funeral we asked for donations to the two charities who helped us immeasurably during his life.
We were delighted to raise more than £1,000, including a couple of donations directly to the charities through Just Giving, and our own contributions. We are in awe of people’s generosity. The donations were divided equally between the two charities, and we dropped off the cheques yesterday.
As with all NHS hospitals, government funding can only go so far. Funds raised by First Touch go towards buying vital state-of-the-art equipment that is out of the scope of NHS funds, resulting in improved quality of care for and management of poorly babies.
Having a baby on a neonatal unit is one of the worst things any parent can imagine. First Touch also makes sure the families are looked after, for example with the Family Centred Care Coordinator post, who provided invaluable advice and support to us – and continues to do the same for others.
The charity also provides small things that make a huge difference, such as a little cool bag to carry bottles of breast milk that mothers express outside of the unit, and the memory box that contains many of my most treasured possessions.
We have asked for the donation to go towards the refurbishment of the Quiet Room. Families spending time on the NNU while their baby/babies are being cared for need to take time out of the nurseries. There are two main rooms: the Parents’ Room and the Quiet Room.
The Parents’ Room is vital to help families recharge their batteries, make calls, make tea, use the microwave or chat to other parents. The Quiet Room can be used for a range of needs, including giving parents a bit of much-needed peaceful space when their baby is experiencing a particularly difficult time. It is also the room where news about a baby’s progress – both good and bad – is given. Sadly, the news about Hugo tended to be bad.
Martin and I spent a lot of time in that room – unfortunately, it isn’t very comfortable at the moment. It is so important for parents to be able to have somewhere peaceful to rest so they can dedicate more of their energies to their baby. The donation will hopefully buy an item of furniture that we can say is Hugo’s.
If you would like to help this project too, you can donate through their Just Giving page.
There are 14 Ronald McDonald Houses at hospitals across the country. They provide a place to stay for families of seriously-ill babies and children, so they can always be close by.
We were incredibly fortunate to have a room in the Tooting House. When we were transferred from Bedford to St George’s, two hours’ drive away, we had no idea what we would do or where we would stay if our baby was born alive. The house was a real lifeline for us because it gave us one less thing to worry about, and more time to focus on our precious baby.
We didn’t have to worry about commuting, or spending lots of money that we didn’t have on a hotel. All the houses have full kitchen facilities, meaning we could not only save money by cooking, but also help maintain our energies by eating healthily. This was especially important to me because I was expressing my breast milk for Hugo.
Hugo was critically ill throughout his life, and the proximity of the house to the unit meant we were never more than 10 minutes away if something happened while we were not there. We are immensely grateful for the house, and the team of caring support staff.
Rooms are offered to families in need free of charge. They can continue to offer this invaluable service to families only through the charitable donations. If you would like to help, you can donate through the RMH Just Giving page.
Making these donations is about expressing our gratitude for all the help, support and kindness we received during Hugo’s life, and beyond.
Like many bereaved mothers who have lost a baby or young child, I am slightly obsessed with making sure my son’s name is said, that he is remembered, celebrated and that he matters.
Yesterday’s visit helped us realise that while Hugo’s death will always leave a gaping hole in our lives, he lives on in the unit’s staff’s memories, and through helping other families in need.
Hugo’s name will always be said, he will always be remembered and celebrated, and he most definitely matters.