BROOKLINE — Amaia Isabel Garcia Andino lay tranquilly in the arms of her father, occasionally reaching her tiny arms up to tug at the white headband with its giant flower holding her dark curly hair in place. A white sweater covered a scar where a feeding tube nourished her.
The quiet scene offered no clue about the difficult road Amaia’s parents had taken to get their only child from Puerto Rico on Friday to this Brookline living room.
The baby’s parents, Alianette Andino, 22, and Kelvin Garcia, 32, are preparing for medical treatment at Boston Children’s Hospital for Amaia, who has a serious heart condition called left ventricular dysplasia. Born six-and-a-half months into Andino’s pregnancy, Amaia had open heart surgery at the age of 2 months and spent the first eight months of her life in a hospital. She left the hospital in March but had to return for continuous follow-up visits. The only nourishment the 14-month-old can take is milk, water, and vitamins through the tube, for fear she might choke. WBUR originally reported this story on Thursday morning.
When Hurricane Maria made landfall on Sept. 20, the family’s problems grew.
Andino and Garcia lost power in their home in Maunabo, a small city on the southeast coast of Puerto Rico, and their water supply became contaminated. They could not go out and buy Amaia vitamins because all of the pharmacies were closed.
Amaia’s condition deteriorated in the worsening conditions.
“She was dehydrated, her sodium was high, her potassium levels were high . . . her oxygen levels were low, Garcia said. “The conditions were at odds with us.”
Amaia’s temperature rose to 103 for several days and her parents grew more and more concerned. Local clinics had closed and Andino and Garcia live an hour away from the hospitals in San Juan.
The family drove to the pediatric hospital in San Juan, where Amaia was treated in the emergency room.
“She was vomiting and had pulled out her feeding tube a little, and wasn’t able to get much nourishment,” said Andino “She was so skinny.”
Doctors gave her oxygen and stabilized her over five days.
The next concern was Amaia’s longer-term care.
With potential open-heart surgeries ahead within the next year, having a reliable hospital was a must. The hospital in San Juan was overcrowded and running on a generator.
Garcia had researched the work of Pedro J. del Nido, a cardiologist at Children’s Hospital, and reached out to him when Amaia’s diagnosis initially became known. The hospital had the expertise to proceed with the three open-heart surgeries doctors in Puerto Rico said she will likely need.
The trouble was getting her out of Puerto Rico.
Garcia heard about Hospitality Homes, a Massachusetts-based nonprofit that coordinates housing for families of patients at the hospital, and called them. Denise Duclos, director of outreach and engagement at Hospitality, got in touch with Jeff Lindy and Gwen Taylor, who opened their Brookline home to the family.
Duclos also put Garcia in touch with Patient Airlift Services (PALS), an organization based in Farmingdale, N.Y. that connects pilots with patients who need help being moved. The organization has been working nonstop in the wake of the hurricanes that have hit the Caribbean, coordinating more than 200 flights for medical disaster relief, she said.
“We’ve been working around the clock. Literally.” said Eileen Minogue, executive director at PALS, who described telecommunications with Puerto Rico as “a nightmare.”
During the four days it took to reach Andino and Garcia, two flights were missed. But the family was finally put on a plane Friday to Boston, where Lindy and Taylor welcomed them into the home they share with two young sons and a cat.
Taylor said they have the space to accommodate the family and her sons, aged 4 and 6, are used to visitors.
“They don’t know anything different,” said Taylor.
Taylor and Lindy are going to invite a Venezuelan family over for dinner soon so that the families can converse in Spanish.
Garcia and Andino have been filling out paperwork for MassHealth and have been told they would soon receive word on whether Amaia’s insurance is good to go. Meanwhile, they’re overjoyed to have a place to stay in an area where they have no family, Andino said smiling.
“We are so grateful. They are all so special to us,” she said. “We may not speak the same language, but we find ways to speak. This is the best place to be.”email@example.com@sweetadelinevt