Kate Ducheneau’s 9-year-old son has a rare form of muscular dystrophy that affects his ability to breathe. When he sleeps, he uses a kind of ventilator called a BiPAP machine that pushes and pulls air out of his lungs.
"Essentially, it does all of the breathing for him at night. He's totally reliant on his machine in order to breathe for him," Ducheneau said.
That machine requires electricity. If the power goes out at night in the family's Kīhei home and the BiPAP machine isn't working, Ducheneau said her son could suffocate.
In a blackout, she'll stay by his side through the night, making sure he's getting enough air.
"I have to really prepare myself to sit with him and watch him breathe," she said. "It's really scary."
Power outages from this month's storms have sent ripples through the health care system.
Some health providers struggled to keep their doors open amid blackouts. Hāna Health in rural Maui lost $15,000 worth of refrigerated vaccines after losing power in the first Kona low. Waimānalo Health Center on O'ahu kept the lights on for two days during a power outage — until their diesel generator ran out of fuel.
Even the more robust Kohala Hospital on Hawaiʻi Island had to troubleshoot issues with its backup generator as it treated patients.
For families like the Ducheneaus who rely on home care, such power outages can quickly become a medical emergency. Kate Ducheneau has spent years searching for a solution.
She and her family were displaced during the Lahaina fires in 2023. A few months later, her son received his diagnosis.
"I just started to talk to anybody that would listen, anybody that I see, that I know, that has any type of legislative power, or even any influence that I can think of, I try to get their ear about this issue," she said, "because if it affects my son, it affects so many other people as well."
Access to power is crucial for people who rely on certain medical devices like oxygen machines.
Faye Mitchell, executive director of North Hawaiʻi Hospice, said these at-home machines allow her patients to receive care in the comfort of their homes. Without electricity to operate them, some of her more vulnerable patients need to go to a hospital.
North Hawaiʻi Hospice provides palliative in-home care to about 25 patients spread out across northwest Hawaiʻi Island. One of their patients is a young boy who requires a medical device to breathe properly.
"This is a child that's so fragile that when he can't breathe properly, they have to fly to Oʻahu," Mitchell said. "So it's really not a matter of inconvenience. It's really a serious issue."
Mitchell said they care for patients as best as they can during power outages. North Hawaiʻi Hospice has a trained safety officer who reviews emergency plans with families, and patients who require oxygen are given extra oxygen tanks if weather conditions might cause the power to go out.
But some of the equipment that their patients need, like oxygen concentrators, requires far more power than a typical portable generator can provide, and Mitchell said North Hawaiʻi Hospice cannot feasibly equip its patients with larger generator units.
"The last time we looked at them, it was $7,000 for the right type of generator, and they’re difficult to move," she said. "We haven't been able to create a practical plan to have that available for our families."
Mitchell is hoping to collaborate with community organizations to fill the gap in patient care created by power outages.
"Maybe there's a way to share a generator, if it is held at a fire station, some common place or resource that we could have access to," she said, "because we're all kind of in the same boat here, especially out in these areas."
A grassroots community program called the Power Back Project recently supplied Kate Ducheneau with a portable battery. It provided a source of power to her son's breathing machine when the electricity went out during the storms.
Ducheneau called the battery "life-changing." But she added that since her son's condition is progressive, the sense of relief the battery provides may be temporary.
"Looking into the future, it's not going to be the long-term solution to the amount of medical equipment that we are going to require to have my son live a long, happy, successful life," she said.
Have power outages affected your medical care? HPR wants to hear from you. Contact sharrimanpote@hawaiipublicradio.
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