Health & Spirit

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.


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