Help Families with a Sick Newborn Baby in Hospital

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.”