Baby Kai went home after a month in intensive care
Rainbow Trust Children’s Charity works with the whole family. We focus on supporting the baby’s siblings, who are often very confused and upset, and unable to visit for a variety of reasons. We also provide a transition service for parents whose babies do recover sufficiently to go home and offer a continued service at home.
“Rainbow Trust allowed me to see my baby more than once a week.”
Parents eagerly look forward to bringing their new-born baby home, so it can be extremely disorienting when they are admitted to the Neonatal Intensive Care Unit. Parents can experience loss of expectation and normality and young siblings cannot often visit the Neonatal Unit.
Thank you for supporting this vital part of our work, caring for families with a seriously ill child.
Tiny Teddy was born at just 23 weeks, in April last year. As he was born so prematurely, he spent five months in hospital and the family was referred to Rainbow Trust for support.
Family Support Workers Fiona and Lucky spent time with Bella, Teddy’s older sister, at the family home so that Obobo, his mum, could give Teddy the one-to-one attention he needed. “I just couldn’t give either of my children the support and attention I wanted for them so, having Fiona and Lucky was a huge help.” Fiona and Lucky were able to make sure Bella was given time to play like any other little girl as well as talk to someone who knew how she might be feeling, in case she wanted to ask questions about what was happening.
By September, Teddy was well enough to go home. He was doing well but, having been so premature, was prone to infection. He developed pneumonia and sadly passed away the next month. Obobo has set up a Forever Fund in Teddy’s memory, which will provide care for other families who need a Family Support Worker.
“I wanted to honour Teddy’s life and the best way to do that was through a Forever Fund for Rainbow Trust. This way he will always be remembered and, if it helps even one family, it will make a difference. Rainbow Trust supported my family and me and gave me time with each of my children when they needed it most. With this fund, more families will have the support too.”
We’re incredibly grateful for every donation we receive, which can help parents of seriously ill children from the point of diagnosis, through bereavement and for as long as they need us. Many families receive help from a Family Support Worker for a number of years and this is only possible through the wonderful support we receive.
When Elly went into labour, she and Sam were excited to finally meet their little bundle of joy. However, parenthood didn’t start out the way they had expected it to. This is Elly’s story:
“When Kai was born, we thought he was fine, but within an hour, he had closed his eyes, had stopped crying and was floppy like a rag doll. He was rushed to intensive care. By day three, he was in a coma and was showing severe neurological problems.
“Sam and I felt so alienated - we often didn’t know what was going on. Because of how quickly newborns can deteriorate, decisions were made about Kai’s care and we were only informed afterwards. If we weren't there when the doctor visited, we didn't get an update.
It was a very, very scary time for us. Everything felt out of our control and emotionally, we were a mess. “It took ten agonising days to diagnose Nonketotic Hyperglycinaemia (NKH). With toxic levels of glycine in the brain, development is severely delayed and stunted. Uncontrollable seizures are common and worse, NKH can be terminal.
“When we met Jo, our Rainbow Trust Family Support Worker, she wasn't part of any medical team. Her focus at the time wasn't on Kai, but us. She asked how we were, what we needed, and how we were coping. She was a breath of fresh air. Jo encouraged us to focus on ourselves and our wellbeing as much as we were focussed on Kai. “A year and a half on, we have a team of 28 consultants, nurses and therapists supporting Kai but Jo is the only person who’s been with us since the beginning.
“At the moment, we have medical appointments every day of the week. Jo drives us to our specialist hospital. Kai’s immune system is too weak for us to consider public transport. If he needs a feed, medication or even more importantly, when he has a seizure or vomits, I know I can focus on him and Jo will get us to hospital safely. If I had to drive, I would struggle to concentrate while looking out for a safe place to pull over to help him.
“Jo helps with the hard things that I think I can’t manage or don't want to do on my own. The best bit is that she normalises life for us. She's not shocked at the medical life we’re living.
“I don't want to consider what life would be like without Jo, and thankfully, I don’t have to. Rainbow Trust will be there for us for as long as we need them, providing someone we trust, who we can rely on, consistently, makes a huge difference to our lives.”
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