My son Hugo was born at St George’s Hospital when I was just 24 weeks’ pregnant. I’ll forever be grateful for the care he received in the neonatal unit, so I was delighted to be asked to become an ambassador for the unit’s charity, First Touch.
The unit (NNU) at St George’s cares for more than 600 babies a year in the intensive, high dependency and special care nurseries. Many of the babies, like Hugo, are born prematurely. Other babies are born at or near term and need support, an operation, or are suffering from a medical condition.
As with all NHS hospitals, government funding can only go so far. Funds raised by First Touch and their valued supporters 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. This equipment can help these babies beat the odds, meaning many proud parents are able to take their precious little ones home.
Being a parent with your baby in a clear plastic box is a very strange, bewildering and stressful experience. First Touch also makes sure the families are looked after, for example by joint-funding with Bliss 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.
Thanks to funds raised by the charity and supporters, the parents’ room has been refurbished to make it a comfortable place for exhausted mums and dads to have a bit of much-needed time out, have a cup of tea and chat to other parents. The Quiet Room refurbishment is next on the list – this room can have a range of uses, including giving parents a bit of peace when their baby is having a difficult time.
Hugo was critically ill for the whole of his life – whether he would even be born alive was in doubt. He fought for 35 days, but sadly he had too many odds stacked against him. My son was too small, too premature, and succumbed to chronic lung disease. Hugo died peacefully in my arms. I am utterly heartbroken, and miss him every day. You can read more about Hugo here.
Those 35 days with my son were the most precious of my life. I will be forever grateful for the opportunity to build a bond with my son, to get to know him, to do his cares and have cuddles – to be his Mummy. These memories are thanks to the dedication and commitment of the unit’s staff who gave Hugo every possible treatment to help him grow, thrive and survive.
It’s clear the staff love and care for the babies almost as much as their parents do. Many of the staff hold Hugo (‘The Boss’) in fond regard and are able to recount their favourite Hugo stories. Hugo was a tiny boy with a huge personality, and many of these stories relate to him being naughty and demanding to get what he wanted, when he wanted it.
Since Hugo’s death, I’ve been dedicating a lot of my time to raising awareness about HELLP syndrome, the rare pregnancy illness that necessitated Hugo’s premature birth; baby loss, and the experience of being a parent of a baby in a neonatal unit.
I’d like to improve the information that is given to parents at these critical times, to help make a difficult experience a little bit easier.
I’m pleased to be working with the unit to improve, update and simplify the information that is given to bereaved parents. One piece of work that is already in progress is being funded by First Touch.
As part of my role as ambassador, I’ll be writing to raise awareness of the vital work of First Touch and how the funds generous supporters have raised are helping babies and their families.
There are so many ways you can get involved and help generate funds: running marathons, cake sales, distributing collection boxes or donating your time and expertise. Any and all contributions are valued and appreciated.
I’ll also be writing more about my experiences as a parent to put in context the unit’s work; the highs and lows of being a mother to a sick and premature baby – and life after the heartbreak of baby loss. It is a way of offering support to other parents in a similar situation.
If you have any feedback, have a particular topic you’d like me to write about or would like to write a guest post, do get in touch. You can leave a comment below, or email me at firstname.lastname@example.org.