and looking after you

"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." Leigh Kendall, mother of Hugo.

First Touch realises the huge importance of supporting the parents of premature and sick babies whilst they are on the nnu. With this in mind, we are very proud to fund the role of the Family Centred Care Co-ordinator.

Here parents talk about the value of this role and the help they received from Bobbie Everson, our FCCC, whilst their babies were at St George's nnu.

"Having developed severe preeclampsia and severe HELLP syndrome, I had been brought from my local district general hospital to St George’s the day before Hugo was born for specialist care. Hugo was born at 24+4. 
 
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.
 
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.
  
Bobbie was able to answer random, but important questions 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 Mat 1B form that I needed to prove to my employer's payroll that I was entitled to maternity pay.
 
Bobbie also gave us some of the best piece of advice we received. Bobbie 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, well-intentioned family and friends wanted to visit to see us and meet Hugo. This advice helped us minimise unhelpful distractions and focus our energies on our son.
 
Hugo, like many premature babies, hated being handled. However, when he was about three weeks old he settled in to blissful kangaroo cuddles with both me and Martin. Some nurses were a bit intimidated about the way Hugo would behave when handled and could be awkward about facilitating these cuddles. Bobbie advised me to insist on these cuddles. I am so glad that she did. 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.
 
Sadly, Hugo lost his fight for life aged 35 days. I am of course utterly heartbroken. I will be forever grateful to the unit for giving Hugo every possible chance, and helping Martin and I get to know our son. 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 value of the Family Centred Care Coordinator post cannot be overestimated, and no more so than in a unit like 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. The post is needed to help care for the parents while their baby, or babies, are being cared for."  
Leigh Kendall

James Findlay, dad of Henry tells of his experience:

"The help and comfort received from the Family Centred Care Coordinator from the start of our NICU journey was invaluable. Whilst the nurses and doctors care for your baby, the FCCC is there for the baby's family. Right from the start Bobbie was there for us for moral and practical support. She introduced herself shortly after Henry entered the NICU, sat down with us to ask how we were coping and explained all the things we could do to help Henry (such as nappy changes, feeding etc) and to help our own bonding with our baby. Bobbie patiently helped with issues revolving around expressing and found work-arounds to any problems. She listened attentively when it all got too much and the tears just came flooding.

It was also Bobbie who was instrumental in us adopting kangaroo care with Henry.  It had been mentioned at the outset by the NNU staff but everything in the first few days of his stay was like walking through a fog. I first really became aware of the history and importance of kangaroo care after noticing the notice board, set up by Bobbie, outside the High Dependency units.  We could definitely see the benefit of the skin to skin each day we could do it. Not only by the calmness it brought to Henry but also how it helped us both to bond with him more quickly.  When Henry moved to Special Care we saw the true measurable medical benefits. Henry suffered quite badly from reflux and associated desats and bradycardia.  It was clear from the more stable readings on his monitor that skin to skin helped reduce these episodes.

It is so important to have such a role like Bobbie’s within the NICU. To have such a point of contact, who is not a member of medical staff but understands what you are going through, helps to take some of the stress and strains (and there are a lot!) of everyday life in NICU away. No question was too great and was always answered. Such a vital role with the NICU."

James Findlay

 

Baby in a blanket

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