Kim and Zeldon Trott consider themselves lucky.

Over the past four years, the Trotts have made about 20 trips to Boston Mass Eye and Ear hospital to get desperately needed medical care for their daughter Kenzie, who was born deaf in 2022.

Thanks to a comprehensive insurance package and helpful guidance from fellow parents who’ve been through it, everything has worked out well for Kenzie, a joyful child who can now hear because of the wonders of technology.

The question, however, remains: what happens if your insurance coverage falls short or you’ve got nobody to turn to for advice?

“Kenzie’s surgery alone cost more than $100,000,” Mr Trott said. “Not everyone’s that lucky to have that amount covered by their insurance.”

Following a succession of surgeries and trips to see specialists, Kenzie received a cochlear implant operation when she was nine months old.

The device gives her the ability to hear by collecting sounds and converting them into signals for her brain; it has been so successful, she now only needs to visit every six months for a check-up.

“The technology is amazing. We’ve seen a great improvement,” Ms Trott said.

“We’ve seen her language grow exponentially. She’s talking now. She’s singing, dancing and hearing us perfectly. We do still require speech services because sometimes she doesn’t say things correctly.”

Ms Trott works as an accountant in the reinsurance industry, and Mr Trott is a supervisor at Belco. Their companies allow them time to accompany Kenzie on medical trips, and their insurance package covers the medical bills and flights, and contributes to accommodation costs.

They’re grateful for the support, but Mr Trott said: “When we think about what we’d do if we didn’t have the insurance – goodness me.”

Support

After tests confirmed Kenzie was deaf, the Trotts went through an arduous process seeking advice from paediatricians, occupational therapists, physiotherapists and local groups supporting deaf people; their struggles were compounded as Bermuda did not have an ear, nose and throat doctor at that time.

But they were comforted after Bermuda Hearing Services put them in touch with a couple who had experienced the same situation.

“Their daughter was found to be deaf maybe a year before Kenzie was born,” Ms Trott said.

“So, we called them and they calmed us down. They were like, ‘Don’t worry. This is what you have to do. This is where you have to go. She’s going to be fine.’”

Since then, the Trotts have become part of a tightknit community of parents whose children have hearing difficulties.

“We found other parents on the island were going through the same experiences as us, so we created a WhatsApp group with about five families,” Ms Trott said. “We can share our thoughts with each other and support each other.”

Mr Trott said the benefits of this group could be replicated on a wider basis across the island.

“I think it’s very important that Bermuda creates some kind of database where we could connect with parents that want to share information,” he said.

“Maybe there could also be some kind of stipend to help parents that don’t have the money or insurance coverage.”

Equity

The Trotts are far from a one-off case.

Dr Sylvanus Nawab, the Chief of Paediatrics at Bermuda Hospitals Board and partner at Bermuda Pediatric Center, expressed concern at the growing number of people unable to afford overseas treatment.

Dr Nawab said an average of about five newborn babies are transferred overseas every year.

“Many remote places face this situation,” he said.

“People understand that and appreciate they have the services to be transported quickly and easily to a good tertiary hospital, and the doctors here will make sure you’re stable before you go.

“Those who have the insurance or financial back-up, they know that soon their baby will be sent to an accepting facility.

“For many people, the stress is made worse by the finances. This is becoming an issue because there are less and less people able to afford insurance.

“And that’s been our issue – how do you support the people who don’t have the insurance and who can’t afford the treatment?”

The Lady Cubitt Compassionate Association’s Patient Overseas Financial Aid Programme is a lifeline for such families. Administered on behalf of the Ministry of Health and Social Services, the programme gives interest-free loans to people who require medical treatment abroad.

But Dr Nawab noted that the loan does need to be paid back. 

He said: “They go away to hospital, then they come back. Then when it’s time to go for further care, sometimes they can’t go because they don’t have access to insurance.”
So what happens to those patients?

“That’s the question,” Dr Nawab said.

“We have to ask, at the legislative level, how are we protecting all our people?

“I’ve had scenarios, where a kid has to go back for treatment, and the parents don’t have high-paying jobs, and they only have HIP insurance, or they don’t have insurance at all.

“In that case, who is the one making sure that this kid has a chance?

“There needs to be a process put in place so that there is equitable access to care.”

Need for change

Minister of Health Kim Wilson has previously said 35 per cent of Bermuda residents are either uninsured or underinsured, which significantly limits their access to quality care.

The Bermuda Government has said it is committed to introducing a single-payer system which will give everyone access to basic health coverage.

Figures were not available for the total numbers of children sent overseas for treatment.

Bermuda Health Council’s report on Overseas Care in 2017 showed a total of 7,526 people of all ages needed overseas care in a 12-month period. That report indicated more than $3 million was spent on children’s overseas care during that period, including $2 million on two-year-olds.

Dr Nawab said children need overseas treatment for many reasons, including cancer, growth issues, endocrinological issues and any type of surgery that can’t be provided in Bermuda.

He added that King Edward VII Memorial Hospital has good relationships with several hospitals in North America, including in Orlando, Boston, Miami, Philadelphia and Toronto, which can in fact be advantageous for Bermuda residents.

Dr Nawab explained: “If you go to a bigger centre like these, you have tons of doctors, tons of nurses, and they can manage a long stay more efficiently, especially for those extreme premature babies. The subspecialists are there to help with any kind of complications.”

Ms Trott agreed that the connection to bigger hospitals is a godsend.

“One family in our WhatsApp group came from the UK,” she said. “They had tried to obtain services there, but the waiting list was so long that they couldn’t make any headway.

“Then they came to Bermuda, and it was instant.”

Kenzie has been through the process so many times, Boston has become like a second home.

“She knows the drill,” Mr Trott said. “We get on the plane, we stay in the hotel, and we make it into a family trip.

“But we know of other people who face a very challenging and difficult road right now, and they need the support too.”