The neonatal unit at St George’s Hospital, London provides specialist care for babies who are the smallest, sickest babies, those that are born prematurely and those that require surgery.
Our son Hugo was affected by three out of those four factors. He was born at just 24+4 by emergency Caesarean section to save both our lives because I had severe preeclampsia and severe HELLP syndrome. These conditions meant Hugo was growth-restricted and at birth he weighed just 420 grams.
I had been brought by ambulance to St George’s from my local district general hospital, a two hour journey, the day before Hugo was born. The conditions of both me and my unborn baby were critical and we both needed specialist care.
My partner Martin and I were elated that our son had been born alive, but we were also bewildered, frightened and lost. We were a long way from home and our much-wanted son was fighting for his life.
We were reassured that our son was being cared for in one of the country’s best units by a dedicated, talented and committed staff. The consultants, doctors and nurses caring for Hugo always did their best to answer all our questions and made sure we were as ok as we could be. However their focus is, quite rightly, on caring for the baby.
When we met Bobbie, the Family Centred Care Coordinator, we were relieved that there was such a kind, compassionate person who was there to make sure we were supported as Hugo’s parents. Her role is to provide information, advice and support to parents, and she does an amazing job. She also gives great hugs – which are very much needed at times!
The innovative post was created and is funded by the unit’s charity, First Touch, and Bliss, the national charity for premature and special care babies.
Irrespective of the reason for a baby’s arrival on the unit, having a baby in any NNU is a scary experience. Any baby’s mother will have recently given birth and most babies’ fathers will be running around making sure both mum and baby are looked after. Parents are bewildered, exhausted, confused, stressed and often feel disempowered. It is therefore hugely important to know there is someone there to help you. The well being of a baby and the well being of the baby’s parents are intrinsically linked.
Like many premature babies, Hugo hated being handled. However, when he was about four weeks old he settled in to blissful kangaroo, skin-to-skin cuddles with both me and his daddy.
A couple of nurses were a bit intimidated about the way Hugo would behave when handled and could be awkward about facilitating these cuddles. Anyone unfamiliar with premature babies might find it strange that a grown woman can be intimidated by a baby who weighs no more than a tin of baked beans. If Hugo wasn’t happy about something, he would have a tantrum that would manifest through a cacophony of alarms and a rapid decline in his stats – a scary experience.
Bobbie advised me to insist on these cuddles. I am so glad that she did. We were able to work out the cuddles with a bit of careful management.
Parenting through a clear plastic box and having to ask permission for even the simplest of things such as touching your baby is very strange experience. I will be forever grateful to Bobbie for helping empower me. Those precious cuddles with Hugo form some of my favourite memories and photos.
Bobbie also gave us some of the best advice we received. For example, she advised us to only accept the help that we needed – and there is sometimes a difference between the help a NNU parent needs and help even the best-intentioned family member or friend is able to give. Being so far away from home, family and friends wanted to visit to see us and meet Hugo. We wanted to see them too, but we were exhausted and were committed to keeping to a routine that centred around Hugo, my milk expressing and getting some rest. This advice helped us minimise unhelpful distractions and focus our energies on our son.
We had random, but important questions that Bobbie was able to answer such as how and where we could register the birth of our baby. Hugo was our first child and that area of London was unfamiliar to us, meaning we were doubly confused. She also offered to help me get a Maternity B1 form that I needed to prove to my employer’s payroll that I was entitled to maternity pay.
Sadly, Hugo lost his fight for life aged 35 days. I am utterly heartbroken. I will be forever indebted to the unit for giving Hugo every possible chance. We are also grateful to them for helping Martin and I get to know our son, and for the opportunity to be a ‘proper’ mummy and daddy to Hugo.
When you are bereaved, there are often things you wish you had done or not done, but it is thanks to Bobbie that Martin and I have no significant regrets about our time with Hugo.
The post is such a good idea I had taken it for granted that every neonatal unit has such a post, but sadly that is not the case.
The value of the Family Centred Care Coordinator post cannot be overestimated, and no more so than in a unit like at St George’s where the very sickest, smallest and most premature babies are taken to be cared for. Being a specialist unit, many families, like us, will be away from home.
It’s vital that there is someone to take care of the parents while the baby is being cared for.