‘My son can’t see and he’s in agony due to his eyes’
WHEN Morgan Nottingham found out she was pregnant she was bracing herself for life to change dramatically.
But when her labour was induced early in March 2022 life in her 20s changed even more than she first expected.
“No-one prepares you to be a parent but especially not a parent of a child with so many additional needs at the age of 22,” said Morgan, 24, from Godre’r Graig, Ystalyfera.
After a difficult delivery at hospital in Bridgend, Morgan’s newborn son Kobi-Jai Morgan was transferred to a neonatal intensive care unit and put on ventilation and a feeding tube.
Kobi had a large hole in his heart, a floppy larynx, and bruising around his eyes which were closed for some time.
He was then transferred to Singleton Hospital in Swansea where he spent six weeks and it soon became apparent that the form and structure of his eyes had not fully developed.
But this March Morgan’s little boy turned one and she is still searching for answers regarding his condition.
Although Kobi’s mother described him as the “most happy, crazy little boy ever”, the toddler, who is registered blind, has been through a lot since first coming into the world.
“Whatever life’s thrown at him he’s just powering through it,” said Morgan. “We’ve come to terms with the fact that he might not have his vision for life. But we get looks as it is. He has bulgy eyes and the bottom of his eyes scrape across his cheek. He doesn’t realise while he’s little but it’s really sad, bless him.”
Kobi’s unknown condition means his eyes are light-sensitive and he spends a lot of time in discomfort.
Kobi scratches his eyes and sometimes tucks his eyelids up towards his eyebrows when they are bothering him. His mother administers four different types of eye drops to Kobi’s eyes every day and the family received specialist transparent glass
es made by Cardiff University for him to wear to help with daily life.
“He cannot carry on with his eyes like that – there has to be someone out there that knows something,” said Morgan, who has travelled the UK in an attempt to find out more about her son’s health with little success.
As Kobi has got older he is now able to tell his mum when he feels uncomfortable and tests have shown he reacts to light and shadows.
The pair have been to Great Ormond Street Hospital in London, visited private specialists, and have been on countless other hospital trips but still do not have a diagnosis.
Kobi recently had open heart surgery in Bristol but the hole in his heart has opened up again slightly since.
“No-one knows exactly what’s going on,” said Morgan, who desperately wants to help her son.
Kobi’s family have started a fundraiser and hope to raise enough money to take Kobi to more specialists and finally get a diagnosis.
“It’s just about Kobi now,” she said.
On the future, Morgan said: “This is completely new to us.
“When he starts going to school – you know what kids are like. He has children coming up to him already and saying: ‘Oh Mammy he looks scary’. I want answers. I want more understanding to do more research and see what we can do to help him further and to bring more awareness.
“At the moment we have found no blind support centres, schools, or sensory classes locally. The closest specialist school is in Birmingham.
“We want to bring more awareness and help and support other parents going through the same thing.
“We’re all learning.”
At the moment we have found no blind support centres, schools, or sensory classes locally. The closest specialist school is in Birmingham. We want to bring more awareness and help and support other parents going through the same thing. We’re all learning.
MORGAN NOTTINGHAM