Valdeen Shears-Neptune
Eight-year-old Kaj Romain is in good spirits and healing after brain surgery to lessen the frequency of his epileptic seizures has been a success.
The aspiring firefighter and his parents, Najja Romain and Deena Gonzales, returned from Florida last weekend, following Kaj’s four-hour surgery and weeks of rehabilitative care.
The child’s plight first came to the public’s attention mere days before the scheduled surgery at the Children's Hospital in Florida, on August 12.
His parents had turned to the media to get help from the Government to meet outstanding medical expenses for the procedure. They claimed that their application to the Children’s Life Fund had been rejected as his condition had been deemed non-threatening.
Kaj was diagnosed with epilepsy since age four and had to be kept from school due to the frequency and violent nature of his seizures.
The overwhelmed parents had also resorted to having him wear a helmet to protect him against further seizure-related injuries.
Kaj used to suffer up to nine seizures daily.
Since the procedure Kaj has not had one seizure, said his mother during an interview with the Sunday Guardian yesterday.
“We are so thankful, first to God and to the people of Trinidad for helping save our son’s life. His procedure involved disconnecting his right and left hemispheres; a procedure known as a corpus callosotomy or split brain surgery. The day before surgery Kaj had a seizure requiring emergency treatment, this was the last seizure he had. Since surgery Kaj has been seizure free,” she said.
While it is possible to have a seizure, Kaj’s doctors have assured them that it would decrease in intensity, length and occurrence.
Funds to have the surgery done were secured through fundraisers and the work done by the Epilepsy Today TT Foundation, founded by Kaj’s parents. Gonzales said Kaj had experienced some medical issues following the procedure which they had been warned may occur.
“Kaj came out of surgery with disconnection syndrome. I was prepared by his medical team for this possibility and assured it would be short-lived. He was mute and seemed unaware of the left side of his body, thus unable to walk. He was, however, aware of our presence,” she recalled. Kaj was subsequently sent to Nemours Children’s Hospital in Orlando for inpatient rehabilitation for a further week, where a team of therapists (occupational, speech and physical) worked with him daily.
However, Gonzales said by the time of his discharge, Kaj was walking, talking and getting dressed on his own.
His therapy will continue locally and the parents said they expected full recovery by December. An assessment will be done at his follow-up appointment with Florida surgeons in February.
As for the issue regarding their application to the Government, Gonzales reiterated that they will be seeking to provide documented proof that an application had been made on her son’s behalf.
Subsequent to the family’s claim, Life Fund officials had advised that they do a “new” application.
Kaj’s surgery cost US$156,000. Gonzalez said the family would have been lost, had it not been for funds raised through the foundation and generous donations from corporate T&T, family, friends, and the public.
However, the family is now facing additional expenses after Kaj had to be treated at Nemours Children’s Hospital after his surgery.
“Now that Kaj is seizure free he is enjoying life to the fullest. He is able to play outside and explore his surroundings. The first meal Kaj was able to share with Najja and myself was an emotional experience as he was on a very restrictive diet that has been discontinued. Our entire family is so overjoyed at where little Kaj is today,” said Gonzales.
Anyone wishing to help can contact the family at 678-4224.