BANGOR, Maine — Four-year-old Phebe Guido has a long, hard road ahead. The Old Town preschooler recently lost her right foot and lower leg to diabetes, a life-threatening disorder her parents had no reason to suspect was at work in their lively youngest child.
“We didn’t know she had diabetes until this happened, and now it’s too late,” said John Guido, Phebe’s grief-stricken father, during a recent interview in the pediatric intensive care unit at Eastern Maine Medical Center.
Phebe’s medical emergency has thrown her family into crisis and their finances into chaos.
Her illness came on fast, in the middle of March. One day, the normally active and high-spirited child was sick and throwing up. The next morning, she was lethargic and feverish.
“She just wasn’t waking up very well,” said Gia, her mother. Though John had recently been laid off from his job as an electrician with Maine’s wind power industry and the family had no health insurance, Phebe’s parents decided to bring the little girl to a walk-in clinic in Bangor. By the time they carried her through the clinic doors, Phebe was unresponsive. An ambulance crew rushed her to the emergency department at EMMC.
Type 1 diabetes used to be called juvenile onset diabetes. It is caused by the failure of the pancreas to manufacture insulin. Without insulin, food energy in the form of sugar cannot move out of the blood and into the tissues, where it is needed for life and growth. Instead, sugar accumulates in the blood, triggering an avalanche of potentially deadly effects. People with Type 1 diabetes must adhere to a strict regimen of diet, daily blood sugar testing, and insulin injections throughout their lives.
Phebe’s blood sugar, when it was tested in the emergency department, was sky-high — close to 1,500 milligrams of glucose per deciliter of blood. A normal range is 70 to 100 mg/dl. She was in acute danger of kidney failure, brain damage, blood clots and other life-threatening complications. To reduce brain swelling and her body’s demand for oxygen, she was wrapped in a hypothermia blanket and put into a medically induced coma.
But already the damage was done. Clots had formed in her lower right leg, cutting off the circulation and destroying tissue. Fluid had built up in her skull and put pressure on her brain. On April 6 surgeons performed a below-the-knee amputation. But though the procedure went well, Phebe has remained nonverbal and largely nonresponsive since the anesthesia was lifted. It may be related to the medications she is on, or she may have suffered some permanent brain damage, or both.
“She opens her eyes sometimes,” John Guido said earlier this week, and she seems comforted by the presence of her parents. Both John and Gia have been at her side throughout the crisis.
Phebe is stable enough now to have moved out of the intensive care unit and onto the regular pediatric floor at the hospital. She’s had a feeding tube placed through her abdominal wall into her stomach to help her stay nourished and help manage her blood sugar.
John Guido said he doesn’t know how long his youngest daughter will be at EMMC or what is in her future. He is grateful that through his labor union he has been able to secure health insurance for his family for at least a few months, but he doesn’t know yet the limits of that coverage, or the deductibles, co-payments or other out-of-pocket spending required by the plan.
“Once we get the bill, it’s going to do a lot of damage,” he said.
And he doesn’t know when he’ll get called back to work.
Gia is on leave from her job with the Orono Recreation Department. Her parents, Jim and Ann Anderson, have driven up from Rhode Island to stay with Phebe’s siblings — 11-year-old Jannelle, 8-year-old Rocco and 6-year-old Lena.
A number of local institutions are lending a hand. The other three Guido children are staying with their grandparents at the Ronald McDonald House in Bangor, and the family has dinner together each night at EMMC. Every morning, the grandparents drive the children to Old Town Elementary School for a day of classes and activities. Each afternoon, a van picks them up at school and drives them to the Orono Rec program.
“They’re helping us a lot,” Gia said of her employer.
Each evening, Gia’s parents pick the kids up at Orono Rec and drive them to the hospital for supper, and the cycle begins again.
In Old Town, friends and neighbors are trying to help out, too. Joe Pouliot, who lives nearby, has raised close to $300 by putting a labeled donation jar on the counter of Tim’s Store at the corner of Stillwater and Main streets.
“The lot rent is $350,” he said of the mobile home park where the two families live, “so we hope that at least we can help with that.”
A recent mention of the family’s plight in Joni Averill’s column in the Bangor Daily News generated a phone call and a $100 check from a chemotherapy patient, and a little girl just about Phebe’s age dug deep to give the family her last 26 cents, Pouliot added.
At the Holy Family Catholic Church on Main Street, the Parish of the Resurrection of the Lord is planning a benefit supper at 5 p.m. Saturday, May 15. Donations for the Guido family will be accepted, and there will be a 50-50 raffle as well. Checks made out to John and Gia Guido also may be mailed to the Parish of the Resurrection, 429 Main St., Old Town, ME 04468, attn: Sue Cust. For more information, call Cust at 827-4000.
The Old Town Knights of Columbus will donate all proceeds of the upcoming Texas Hold ’Em tournament to the Guido family. The tournament will take place Saturday, May 1, at the Knights of Columbus Hall on Gilman Falls Avenue. Sign-in starts at 10 a.m., and the entry fee is $60. For more information, call Ron Henderson at 827-3077.
For the Guido family, this show of support is heartening, deeply moving and much appreciated.
But their daughter, they know, will never be the same. Even if Phebe regains her brain function, she and her family face years of physical and occupational therapy as she learns to live with a prosthetic foot.
They also must all become experts at learning to manage her diabetes to recognize warning signs and avoid future complications.
John Guido is bitter and frustrated that Phebe’s illness wasn’t picked up during routine visits to her pediatrician.
“It turns out there are signs,” he said. “She was thirsty a lot, and peeing a lot.” But he and Gia didn’t realize the implications of these cardinal symptoms of Type 1 diabetes, and her medical providers, he said, never asked.
“She lost her leg because nobody knew about it,” Guido said. “She was right on the brink of losing everything.”