Rainbow Trust Children's Charity is an organisation that supports families who have a child with a life threatening or terminal illness. It employs Family Support Workers who work with individual families offering tailor-made emotional and practical support. Families can be referred for support by anyone, provided it is with the knowledge and consent of the family.
Medical advances now mean an increasing number of babies are surviving longer with much more complex needs. Rainbow Trust developed its specialist Neonatal Family Support in 2014 in response to research conducted by the University of Leeds in 2012 that highlighted the number of newborn babies that may require palliative care. In the past year, 33% of all Rainbow Trust's referrals were for children under one year's old which is really striking. The charity is keen to develop its neonatal service further in the future, when funds in the current tough financial climate allow.
Rainbow Trust's Neonatal Support workers provide essential additional support to families to help them cope as they navigate a frightening start for their new baby. They work alongside staff on neonatal intensive care units in London, Southampton and the North West to offer additional support while babies are sick. They are not based on the unit, which means that they remain independent of the unit's multi-disciplinary team – something that has been favourably commented on by parents who welcome a slightly more independent source of support. ‘It is well documented that admission of the newborn to the neonatal unit has a significant impact on the family with many negative effects’ (Bystrova, 2009).
Rainbow Trust Neonatal Support workers can act as a bridge between home and hospital, minimising the sense of separation from the newborn baby. They can act as a source of information and support when dealing with medical and nursing staff, and can be a constant presence in family life until no longer needed. Their role in supporting brothers and sisters can be invaluable, helping children understand the changes to their family life and offering them time to be children.
The Neonatal Support Workers agree with each family the area of support that would be most beneficial on any given day. The flexible nature of the support means that families receive the help they need at the time it is most required. They can see families on the unit or at home to enable them to come to terms with the additional pressures they are facing.
‘The charity is keen to develop its neonatal service further in the future, when funds in the current tough financial climate allow’
Neonatal Support Workers can offer families:
Emotional support
Practical support
Rainbow Trust works with all family members. Crucially, it accepts family referrals, because of a sick child and not for a sick child. This means that, in some circumstances, a family's support may purely be for parents, siblings or extended family members. It is there to help with the practical tasks associated with having a seriously ill child, such as travelling to repeated hospital appointments or accompanying parents to consultant appointments to listen to new and often bewildering medical information. They can also offer sibling support that enables parents to concentrate on their sick child and allows healthy siblings to continue with their routine as best as possible.
Rainbow Trust will continue to support families following discharge from the intensive care unit, allowing them time to adjust to life back at home while still meeting the urgent care needs for their baby.
Shattered dreams of motherhood
Ella-Mae Michalski was supported by Rainbow Trust when her twins were born at 26 weeks. Here, she describes what life was like and how their Neonatal Support Worker helped her and her partner to cope.
‘Like many mothers who find themselves in the neonatal ward, my experience was a far cry from any expectation of how I'd imagined parenthood would be. The dreams of holding my baby close in my arms was replaced by tubes, wires and scary medical terms I'd never heard of before. I found myself in an environment laced in fear and worry, a place where no parent wants to be. The realisation that there was no certainty of whether my fragile twins would survive or not was almost too much to bear. At birth, both my twin daughters Bella and Ruby weighed under 2lb and could fit in the palm of my hand. Their skin was translucent, and they were placed into an incubator immediately after birth to give them the best chance of survival.
In the days that followed, I did my best to remain strong in the face of adversity. My fiancée, Giovanni, and I had been told early on that the chances of the twins surviving was slim. I had issues with my cervix throughout my pregnancy and was placed on immediate bedrest under doctors' orders from 20 weeks.
Despite having numerous appointments and scans, and receiving the best medical care, our hope began to dwindle, and fear set in that our girls might not make it. We knew that even if the twins survived, their health might suffer in the long term, and we had no idea how to handle this. Our future felt uncomfortably uncertain.
I managed to carry both girls to 26 weeks and 4 days. Though their birth was straightforward, we knew their fight was far from over. The days in the neonatal ward felt like they never ended. Each day grew longer, as Bella and Ruby's health improved and deteriorated interchangeably, at what felt like an unstoppable speed. Giovanni and I found ourselves trapped on an emotional rollercoaster.
Collectively between them, the girls had over 10 blood transfusions and other complications in the days that followed. Neither of us had any knowledge of this new and scary world we found ourselves in, and we needed support.
I reached out for help from Rainbow Trust when I saw a leaflet in the parents' room, which offered help to parents of seriously ill children. After a brief phone call, a date was made for a home visit. I wasn't sure what to expect and was incredibly anxious about talking to anyone about how I'd been feeling. I needn't have worried, as a kind Rainbow Trust Care Team Manager came and sat with me to listen to my situation, and ask how I would like to be supported. We all agreed some practical help would be the best place to start, and within a few days, we met Fiona who became our dedicated Family Support Worker. Fiona supported us immensely in the challenges that lay ahead.
We anticipated that once the girls were home from hospital, that our problems would disappear. Much to our angst, the girls required around the clock care, as we were told they had chronic lung disease and required 24-hour oxygen support. During the next eight months, Fiona provided a cushion to the heavy blow for our whole family. She provided much-needed respite and support, and attended hospital appointments with us.
Due to their prematurity, the girls' lungs hadn't developed at the same rate as other babies. The oxygen worked to help their tiny bodies receive the oxygen they needed while not putting too much pressure on their already weak bodies. The hospital gave no inclination of how long both twins might need this care for, however eight months later we celebrated having two babies off breathing support. Both girls are now happy and healthy, and their early difficult days in this world are a distant memory for us. We will never forget the kindness and support shown to us by Rainbow Trust during the hardest days of our life.
Rainbow Trust dedicates itself to supporting families like mine and have Family Support Workers like Fiona across the country who can provide tailored care to suit their family's needs. Last year alone they provided over 5 000 hours of hospital support to families, allowing parents to take a much-needed respite break while spending endless hours in hospital.'
To find out more about Rainbow Trust and its support for families, visit rainbowtrust.org.uk