When Kyffin was born two months prematurely, there was a team of people waiting to take him to NICU (neonatal intensive care unit). It was the start of six months in hospital for Kyffin and parents Richard and Sarah.
“Intensive care was intimidating because he was in this incubator and there were all these wires, constant beeping and equipment – monitors, UV lights, tubes in his nose,” says Sarah. “You could only touch him by putting your hands through a little port and it was two days before I held him properly. The nurses held all the wires and placed Kyffin on me. It was an amazing feeling.”
After a number of failed attempts to step down his level of care, parents Richard and Sarah began to realise he may have long-term complexities.
“He kept having these episodes and you knew they were serious because the nurses didn’t hang around – they were running to bag him with oxygen and whisk him away,” says Richard.
“I think that’s when we realised things would be different.”
“It was a conversation with a doctor that really stuck out for me,” adds Sarah. “All I remember were the words ‘concerns unrelated to his prematurity’. I had Kyffin on my chest and just sobbed my eyes out.”
During Kyffin’s six months in hospital, Sarah sat by his bed ten hours a day, while Richard tried to function at work before returning every evening.
“We had one meeting where a neurologist painted the worst-case scenario based on the initial results of a muscle biopsy,” says Sarah.
“She said his condition was so rare that she’d had to research it herself, and then proceeded to tell us Kyffin would never walk or talk, never use his hands or be able to sit, and may need to be ventilated. She concluded by saying his long-term prognosis would depend on him making it through the next few months. It was the worst moment of my life.”
Richard says they felt isolated. “We felt on our own because it was difficult to repeat what we’d been told. I remember ringing my family and explaining we’d had a meeting and it wasn’t great news but couldn’t bring myself to actually tell them the detail. It felt like repeating it would be admitting it was true, and it was too painful to do that.”
“Then Shooting Star Chase arrived to mop us up,” says Sarah. “We’d been in hospital for so long and although we had some great people looking after us, the doctors only really talk clinically. The Symptom Care Team from Shooting Star Chase turned up and suddenly they started talking in a different way – talking about what was best for Kyffin as an individual, and what was best for us as a family. I remember them saying, ‘Wherever you are, we’ll be there for you.’ And they have been.”
The devastating diagnosis was discounted when genetic results came back negative, although the long-term prognosis for Kyffin is still unknown. The current diagnosis is a congenital myopathy, type unknown.
“Because of his complexities, caring for Kyffin is exhausting,” says Sarah. “He has medicines four times a day, plus a feeding pump ten hours overnight and six hours during the day. The day is punctuated by preparing meds, doing a flush, putting the food on, taking the food off, doing a flush, doing the meds, doing a flush. Plus he can’t swallow so you can never predict how his secretions are going to be. At night you’re often running up to suction him. You can never really relax.”
Kyffin attends day care once a week and the family also benefit from short breaks.
“I don’t like to imagine what life would be like without Shooting Star Chase,” says Sarah. “Because of his specific needs, nobody else can really look after Kyffin, so our trips to Shooting Star House are very special. They look after him and we can relax, which means we go back to caring for him with our energy restored, and that helps us be better parents for Kyffin. We’ve both gone part-time to care for Kyffin so that day in day care has effectively allowed us to keep our jobs. Kyffin is happy there too. When we see him he’s beaming. He’s so busy playing we almost have to remind him we’re mummy and daddy when we turn up! Day care has really contributed to his development too. He’s much more confident, happy and engaged.”
One of the things which has stood out for Richard and Sarah is the staff at the hospice.
“We met some great nurses in hospital but it wasn’t across the board,” says Richard. “At Shooting Star House it doesn’t feel like they’re employees doing a job. It’s like they’re friends who want to be there to help you.”
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