Coby
One-year-old Coby has a rare heart condition which saw him have three major surgeries before the age of eight-months-old.
Round the clock care, with constant medication and feeding, means life is difficult for parents Amanda and James, who also have a six-year-old son, Alistair.
At their 20-week scan, the couple were told Coby had Hypoplastic Left Heart Syndrome – a rare condition where the left side of the heart doesn’t develop fully and affects around one in 5,000 babies in the UK.
“It was such a lot to take in and process,” said Amanda. “Coby was born at 37 weeks, and he spent a few hours in Neonatal Intensive Care Unit before being transferred to Peadeatric Intensive Care Unit.
“My little baby had his first heart surgery at just two-days-old. At seven-days-old he had the Norwood Procedure, where a new, larger aorta is built; and then at eight-months, he had the Glen Procedure, which improves blood flow.
“His surgeries were all very scary and daunting and I felt very alone at the time.”
When in hospital, Amanda and James met a our Clinical Nurse Specialist and found out more about Rainbows.
After receiving support and help from the team in hospital, the family carried on their Rainbows journey by attending our Baby Group.
“I wanted to be somewhere I felt normal, and people didn’t look at my child like there was something wrong with him,” said Amanda. “And it is somewhere we could go and be out of the house, and I wouldn’t worry that my child was going to get ill.”
The family now go to our Coffee Mornings and also have stays at our hospice. Alistair is also benefiting from our Sibling Support Service.
“This is really helpful for Alistair,” said Amanda. “It gives him somewhere where he can feel he can open up and someone he can talk to about what he feels is going on with Coby.”
Coby also has a chromosome duplication and it is unknown how this will affect him. He also faces further heart surgery before he is five and is waiting on an operation for a feeding peg.
“Every day is tough, but we just need to see what happens,” said Amanda. “We know of children with his condition that have been on the heart transplant list so that is a worry for us. We make every day special for Coby.
“Rainbows is a big support to us. There is always someone who can listen to us and not judge me on my hardest days. The staff let me be mum to both my boys as there are times when I feel I am not mum to Coby as there is so much medical stuff going on. But at Rainbows, I feel I can step away from then medical needs. Coby loves Rainbows, it gives him better freedom and he can explore without worries of infection.”
Rainbows is a big support to us. There is always someone who can listen to us and not judge me on my hardest days. The staff let me be mum to both my boys as there are times when I feel I am not mum to Coby as there is so much medical stuff going on
