The mother of 13-month-old Ky’Mani Thompson has lost hope in the public health care system and is advising parents to be persistent, even when doctors try to appease their suspicion that something is wrong with their child.
Sarah Greene-Thompson says she learnt this lesson the hard way after she repeatedly complained to doctors at the San Fernando General Hospital that something was wrong with her baby’s eyes but they dismissed her complaints.
Had she been persistent, Greene-Thompson believes her son’s eye condition would have been detected in time and he would have been spared a life of blindness. “I feel like it is my fault because I was not persistent enough with the doctors.
“Had I as a parent put my foot down and insist they examine his eyes and not take what they said to be right and even get a second opinion sooner, Ky’Mani may have had his sight today. I kind of lost hope in the doctors here. I have no faith in them.”
Hoping to save Ky’Mani’s sight, his mother took him to the Bascom Palmer Eye Institute in the United States three weeks ago.
But due to the extensive damage to his retinas, the doctors could not restore his sight and were only able to perform a light perception procedure on his right eye. “His left eye was too damaged so it did not make sense for them to go into that eye. Light perception is to prevent him from being in total darkness. He would be able to tell the difference between day or night. He will be able to see light.
“For a child to be in total darkness, he will be confused and depressed and have trouble sleeping and functioning so the light perception surgery will make his life a little bit easier,” said Greene-Thompson, who returned home with her son on Friday.
Ky’Mani was diagnosed with Retinopathy of Prematurity, an eye disorder which affects premature babies. Born at 29 weeks, he spent a month in an incubator and then underwent a routine eye test at the San Fernando General Hospital before he was discharged.
In the weeks that followed, however, his mother complained several times to the doctors during routine check-ups at the hospital that Ky’Mani was not focussing and something was wrong with his eyes. But she said the doctors claimed the muscles behind his eyes had not yet developed because he was born prematurely. When he was five months old, Greene-Thompson took Ky’Mani to a private ophthalmologist who finally detected something was wrong and gave her a referral letter to take to the hospital. It was only then that doctors at the hospital diagnosed him with the condition.
Greene-Thompson and her husband D’Andre Thompson’s search for foreign medical care began after they were told there was no paediatric vitreoretinal surgeon in T&T to perform the surgery.
Armed now with the knowledge that the condition could have been treated with a simple laser procedure if detected early, she advised parents, “If you realise something is wrong with your child, insist that the doctors pay attention to what you are saying and don’t take what they (doctors) are saying as right. Insist that they examine your child, because that is what happened with Ky’Mani. They did not take the time to look at his eyes. Parents put your foot down and make them listen and do something about it.”
Thanking the Hope of a Miracle Foundation and everyone who helped them with funds for his surgery, which was initially priced at US$16,000, Greene-Thompson said her baby is happy and doing well. She has to take Ky’Mani back to the eye institute in January for a checkup.
“I asked them if somewhere down the line if he may be able to regain sight. They said it was highly unlikely he will ever see again,” said Greene-Thompson, who quickly added, “God is good. He will be fine. It is not the end of the world.”