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Mother is stuck in health care dilemma as her baby struggles with illness

Elizabeth Koh, Miami Herald on

Published in Health & Fitness

MIAMI--When Victoria Malave breathes, all you can hear is a relentless, insistent chirp.

It's the sound of her ventilator, which the 10-month-old Puerto Rican baby has needed to keep her alive for much of her short life. After Hurricane Maria knocked out power to the public housing where she and her parents lived, her gastric tube became infected and she was airlifted to Miami to seek medical care.

But since she and her mother Maricelis Jimenez, 38, arrived in South Florida on Oct. 15, mother and daughter have found themselves ensnared in medical limbo. They hoped escaping the island would get baby Victoria medical attention she couldn't get at home. Instead, her case has been wrapped up in health care red tape, made only more complicated by the logistics of hurricane disaster relief.

Efforts to place her at Nicklaus Children's Hospital in Miami, where the baby was supposed to initially go, failed because the hospital said she didn't meet medical criteria for admission, according to Victoria's hospital records. Joe DiMaggio's Children's Hospital in Hollywood, where they ended up, tried to turn them away before verifying the baby's infection and admitting her to stabilize her condition, the mother said.

But after four days, the Hollywood hospital discharged Victoria to a temporary AirBnB rental that expires at the end of the month. Advocates and her mother say Victoria still needs more medical attention and, come November, somewhere to live unless lagging disaster response funds come through or a hospital readmits her. To add to the challenges, Victoria's mom is struggling to get medication for her own blood clot disorder.

"They went from one disaster to another disaster," said Ernie Martinez, an advocate for the family and the chair of the Miami-Dade County Commission on Disability Issues. Hurricane Maria "was a natural disaster that she fled from -- now, she's walked into a human and society systematic disaster."

But returning to Puerto Rico, where vast swaths of the island remain without electricity or water, is a dangerous option.

Nicklaus Children's Hospital declined to comment, citing patient privacy laws. Lourdes Rodriguez-Barrera, a spokeswoman for Memorial Regional Hospital in which Joe DiMaggio is housed, also said the Hollywood hospital could not comment on Victoria's case for similar reasons.

"Every patient who comes to our door is assessed and provided with care in keeping with the high standard of care for which Joe DiMaggio Children's Hospital is known, regardless of ability to pay," a statement from Memorial read. "When it is time for discharge, staff members work collaboratively with patients and their families to ensure a safe transition of care post-hospitalization, which transition includes a treatment plan, and when appropriate, recommendation for home health care or a transfer to a post-acute care facility. Any patient with a need for further care is always welcome to return to Joe DiMaggio Children's Hospital for assessment for emergency treatment or acute health care needs."

Victoria Isabel, born Dec. 28 by C-section, struggled from early on to survive. A brain bleed about 21/2 weeks after her birthday caused seizures. After she choked on milk in the hospital, she had to have a breathing tube inserted through her mouth before she was even a month old. She bounced in and out of the hospital for months.

"They would take the tube out, they would put the tube back in," Jimenez said in Spanish, through Martinez. "She lived in the hospital."

On the occasions she was discharged back home in Coamo with her parents, Puerto Rico Medicaid ensured that Victoria had about 16 hours a day of home health aid. Jimenez, who was an emergency medical technician until a blood clot disorder put her on disability at age 25, tended to her the rest of the time.

More medical complications required Victoria to have a breathing tube installed in her neck in April, and a doctor suggested that Jimenez and her husband Juan consider taking their baby girl to the mainland U.S., where Victoria might receive better care. But constrained by Juan's meager income as a farmer, they hadn't made plans to do so when Maria first began to spin into existence out in the Atlantic.

As the storm approached, Jimenez had only one concern: her daughter. Victoria could only breathe for 10 minutes at a time without her ventilator, and she had a lineup of other medical equipment -- a suction machine to clear the vent tubes and an oxygen concentrator -- that also required electricity.

"All I could think about was the power," Jimenez said.

The morning of the storm, as the transformer powering their public housing complex began to flicker out, Jimenez and her husband fled with Victoria, machines in hand, to a hospital clinic about three minutes from their home.

The storm eventually downed power in every other building in the neighborhood, Jimenez recalled, save the clinic's backup generator that kept the lights on.

When the clinic's generator also began to run out of fuel over the weekend, the tiny family took an ambulance 10 miles away to Hospital Metropolitano Dr. Pila in Ponce on the southern coast of the island.

It was there that Jimenez was offered a spot on an airlift out of Puerto Rico as the island's situation grew dire, according to Jose Torres, the pediatrician on call when she was admitted. In an email sent later to Memorial Regional Hospital, he wrote that Victoria's feeding tube also developed an abscess shortly before she was transported.

"Only 13 percent of the population has electricity, which is still not stable and communications are still not working," he wrote. "Hospital institutions in the south part of the Island are having a difficult time (receiving) adequate oxygen supplies, making it even more difficult for ventilator dependent patients" to get the supplies they need.

On Oct. 15, a few weeks after her family had fled their home, Jimenez strapped her baby onto a plane organized by Warrior Angels Rescue, a group which coordinated chartered evacuation flights for people with urgent medical needs. Her husband Juan stayed behind to try to salvage their belongings. The plane transported Victoria and her mother to Miami, and Jimenez was given instructions to take an ambulance from the airport to the emergency department at Nicklaus Children's Hospital in the city.

But when the plane landed, a mix-up among the paramedics on the ground led Jimenez and her daughter to be shuttled 20 miles north to Joe DiMaggio's Children's Hospital in Hollywood, Martinez said.

There, Jimenez quickly discovered -- contrary to what she had been told -- that the Medicaid that had kept Victoria alive in Puerto Rico had not followed them to the mainland.

"They started to ask me if the baby had insurance," she said. "Before they even checked her, they asked if she had insurance here."

A staffer took her information, she said, then returned and told her her Puerto Rico insurance was not valid. Then, she recalled, a staffer told her to leave.

"You need to take the baby," she recalled hearing.

Jimenez and people from the Warrior Angels Rescue group urged them to contact the doctor from the hospital in Puerto Rico to verify Victoria had an infection around her gastric tube. Around 1 a.m. Monday, Victoria was successfully admitted, Martinez said.

Four days later, deeming the baby stable and the infection addressed, hospital staff discharged Victoria with a few weeks of formula and some rental medical equipment including the ventilator, according to records the family provided. They also accidentally discharged the baby with unmixed antibiotics to treat the infection, though the medications are supposed to be mixed by pharmacists, advocates said.

Martinez, the family advocate who also chairs the Miami-Dade disability commission, charged that Victoria, still on the ventilator and the feeding tube, should have had more medical attention.

"This is not an outpatient sort of thing. They wanted to stabilize and not treat," Martinez said. "They took the cheapest way out."

A discharge form claimed that the hospital's social work and case management team had "worked extremely diligently" with local advocates "to arrange for a safe discharge environment. She is going to a home in Miami Beach."

What the form didn't mention was that the home is a room in a AirBnB, rented out by another Puerto Rican family who fled to the mainland before Maria hit. When the rental agreement ends on Oct. 31, Jimenez and her daughter will need to find somewhere else to live.

For now, Victoria sleeps fitfully in a queen-size bed she shares with her mother, heartbeat monitor wrapped tightly around her right foot. The ventilator, a constant companion since she arrived on the mainland, beeps on a makeshift nightstand next to her. From it, a tube half as wide as her wrist snakes up toward her throat.

Jimenez hasn't slept much either, rubbing at her red-rimmed eyes and occasionally running a hand over her hair. Every 45 minutes, Victoria's equipment beeps again, reminding her to check on her baby and make sure the ventilator is still operating as normal.

She also faces a medical crisis of her own -- without her own Medicaid, she has only about two weeks' worth of anticoagulant medicine to keep her blood disorder under control. Without it, she's at risk of an errant clot causing a fatal blockage, a heart attack or a stroke.

A spokeswoman for the Agency for Health Care Administration, which administers Medicaid, declined to comment citing patient privacy laws.

Joe DiMaggio Children's Hospital told Jimenez shortly after her daughter was discharged that Victoria's Florida Medicaid coverage kicked in, but that she can't be readmitted unless she develops another acute condition.

That means unless the infant becomes dangerously sick again, the two are still without somewhere to go at the end of the month. Advocates are trying to find somewhere new to house them, Martinez said, but their own funds are likely to cover only another week of private rental housing.

Advocates have also helped Jimenez apply for help from FEMA, though they still have not secured enough funds from the disaster response agency to house her and her baby.

"This being tossed out of hospitals and being placed in the community and making it appear she doesn't need medical assistance is wrong," Martinez said, faulting bad communication among health services and federal agencies in coordinating Victoria's care.

Jimenez's biggest fear is that without anywhere to go, Victoria might be taken from her and put in the foster care system. But Jimenez would rather take her chances in Puerto Rico, where much of the island remains without precious power, than lose custody of her daughter, she said.

"What I wanted for my daughter was to get treatment or therapy," Jimenez said, to eventually wean her daughter off the ventilator. "I've seen other folks in Puerto Rico with similar conditions, where doctors give you no hope," she added, describing some patients who remain on life support their whole lives. "They're like creatures."

She wants more for Victoria, she said: "A normal life."

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