MUM WANTS ANSWERS TO SON’S EYES MYSTERY
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 last year life 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 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 where he spent six weeks and it became apparent the form and structure of his eyes had not fully developed.
Now more than a year after his birth, Morgan is still searching for answers regarding Kobi’s condition. She says Kobi is the “most happy, crazy little boy ever”, but the tot, who is registered blind, has been through a lot.
“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 every day and the family received specialist transparent glasses made by Cardiff University for him to wear.
“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. Kobi’s family have started a fundraiser and hope to raise enough money to take him to more specialists and finally get a diagnosis.
On the future Morgan said: “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.”