Family struggles to care for daughter in wake of Puerto Rico power outages

CIALES, Puerto Rico – The night Hurricane Maria ravaged the island last September, Martha Rivera worried most about her daughter, Melissa.

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More than seven months after the hurricane, she finally is able to sleep at night. Two weeks ago, power was restored to the family home, but with spontaneous power outages throughout the island, Melissa’s well-being is at risk.

She had worried for more than half the year that the two generators keeping her 23-year-old daughter alive would fail and Melissa would die. Melissa is bedridden, diagnosed with cerebral palsy and multiple maladies that have left her deaf, partially blind and unable to speak.

“Having power back is still surreal to me, I thank God for it every second,” Rivera said through an interpreter by telephone. “I pray that the families who are still in the darkness will get power back soon. For this I pray every day.”

The cords that keep Melissa alive are strung around the foot of her bed. The feeding tube through which her mother delivers her meals each day – a variation of chicken or turkey flavored baby food mixed with water and Enfamil – hangs with a collection of translucent tubes that run from different parts of Melissa’s body connecting her to the machines she needs to breathe. Her vital medical equipment includes a reclining motorized bed, an asthmatic nebulizer and a medical suction device used to prevent her from choking on food or liquid.

“It is a miracle that they finally got power back,” said Dr. Sally Priester, who has voluntarily assisted the family since the hurricane. “Melissa requires 24/7 care, and so for Martha to have one less thing to worry about means everything. It means there is hope for Melissa.”

The family home sits at the top of a muddy, winding road in small community located within the island’s central mountain region. When Cronkite News reporters visited the home in early March, it had no power and only a partial roof. Rivera, who painstakingly cares for her daughter, was distraught.

“My biggest fear is that I stay sleeping and when I wake up, she is not breathing anymore,” Martha Rivera said in Spanish. “That is why I don’t sleep. I don’t sleep because that brings me fear; that I get up and see she’s not breathing.”

Families across Puerto Rico have had to cope with long periods without electricity since Hurricane Maria devastated the island Sept. 20, 2017. Just 14 days before Maria made landfall, Hurricane Irma had left nearly 1 million residents without power, according to global humanitarian aid agencies.

An estimated 50,000 Puerto Ricans remain without power, many of them in rural and mountainous regions such as Ciales. Many families depend on gasoline-powered generators to power their homes. The hum of generators was heard throughout the lush forests in the center of the island during Cronkite’s March visit to the island.

The Rios-Rivera family used two generators to keep Melissa’s equipment running. Jose Manuel Rios, Martha’s husband, works as a landscaper in the towns surrounding Ciales and most nights does not return until 9. He worked 12-hour days to pay for gasoline to fuel the generators, leaving only the $700 the family receives monthly through Social Security for other expenses.

One generator, lent to the family by a nephew who left the island for the mainland after the storm, was used to cool Melissa’s room, which must be kept at 66 degrees 24/7 to prevent her from going into convulsions. The second generator, which was 14 years old and need of repair, powered all the other devices Melissa relies on. The rest of the house was dark.

The devastation of the hurricane posed yet another challenge for a family that has already seen many trials, especially in caring for Melissa.

The couple had struggled to conceive before Melissa was born. As a baby, Melissa shook uncontrollably. Her parents didn’t realize at the time she was having seizures.

Frantic, Rivera took her daughter to the hospital, where doctors diagnosed Melissa with cerebral palsy, which impacts her motor skills, muscle tone and posture. They also diagnosed her with asthma, severe scoliosis and several other disorders that rendered her blind and deaf in her left ear.

Melissa Rios Rivera, 23, lives in Ciales, Puerto Rico with her mother Martha Rivera and her father Jose Manuel Rios. She is bed-bound due to her cerebral palsy which impacts her movement, muscle tone and posture. Her life depends on the machines that are operated by electricity, like her electric hospital bed, fluid suction, and her asthmatic nebulizer. (Photo by Lerman Montoya/Cronkite Borderlands Project)

Although Melissa is 23-years-old, her body is not fully developed. She was never able to crawl and never took her first steps. (Photo by Lerman Montoya/Cronkite Borderlands Project)

Melissa’s older brother Jose Luis Rios Rivera always wanted a sister. Growing up he saw his cousins and always wondered why his mom didn’t have another child. Martha and her husband tried many times to conceive a child but Martha had many complications. When they got the news that they were going to have Melissa, Rios Rivera swore he would make it to every doctor visit with his mother. (Photo by Lerman Montoya/Cronkite Borderlands Project)

Melissa’s room must be kept frigidly cold to keep her body from seizuring. The A/C is hooked up to a generator to keep it powered 24/7. Martha Rivera also massages her body a few times a day to relax her muscles and relieve her body’s severe pain. (Photo by Lerman Montoya/Cronkite Borderlands Project)

Martha Rivera rarely has a good night's sleep. She spends her nights laying in the bed next to her daughter worrying about her health. "She, how she is, is still my daughter, I love her, I adore her, and if I have give her my last drop of blood, I will," Rivera said in Spanish. (Photo by Lerman Montoya/Cronkite Borderlands Project)

"It is a part of me. I don’t even need to check the clock to know that she needs to be fed and have her diaper changed. This is a part of me," Martha Rivera said in Spanish. Melissa is fed through a feeding tube that is attached to her stomach. According to her mother, she has gotten used to the strange sensation of the process. (Photo by Lerman Montoya/Cronkite Borderlands Project)

Martha Rivera uses a medical suction to clear her daughter's air passageway. Melissa’s medical equipment relies on the power to be on. When Hurricane Maria wiped out Puerto Rico’s electrical grid, they spent over seven months relying on the power of two generators. Rivera feared that the generators would give out while Melissa was having a chocking and coughing episode, and she would not be able to save her daughter's life.(Photo by Lerman Montoya/Cronkite Borderlands Project)Martha Rivera puts an asthmatic nebulizer on her daughter after a choking episode. Rivera not only sleeps in the same room as her daughter but fears that one day she will find her daughter dead if she is away from her for too long. (Photo by Lerman Montoya/Cronkite Borderlands Initiative)

"The first thing, before I go to sleep is I stand in front of her and pray. I ask God, Jesus and the Virgin Mary for her to be in good health and for them to take care of her, and for her not to get sick" Rivera said. (Photo by Lerman Montoya/Cronkite Borderlands Project)

Melissa has never taken her first steps, and she can’t feed herself. She communicates with her mother through a series of blinks and eye rolls. When she chokes, Rivera suctions the saliva and mucus from her throat.

“I constantly have to be over her if she coughs, if she spits; if she starts choking she turns blue because for lack of oxygen,” Rivera said. “She depends on her machines and the air conditioner.”

But the hurricane and its aftermath only strengthened the bond between mother and daughter.

“I know that when God sent me Melissa, it was a proposal,” Rivera said. “Not everyone in the world is sent this. And she, how she is, is still my daughter. I love her, I adore her, and if I have to give her my last drop of blood, I will.”

Cronkite Borderlands Project is a multimedia reporting program in which students cover human rights, immigration and border issues in the U.S. and abroad in both English and Spanish.

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