EDITOR’S NOTE This is a follow-up from a March 23 article.
It wasn’t until 5-month-old Messiah Jose Castaneda came home for the first time that he ever completely smiled, his parents said.
He was born Nov. 6 with hypoplastic left heart syndrome, a rare congenital heart defect, and spent most of his life in the hospital where he would give the occasional grin to his parents, Amanda Lucio and Edward Castaneda.
“We just have to treat every day as if it’s his last,” Lucio said. “It’s a different kind of feeling to bring him home. … It feels good to be home, it’s a relief. It sucks to bring him home under these circumstances, would rather have brought him home to grow and enjoy his life, but it didn’t work out that way.”
After multiple surgeries and numerous complications, hospitals deemed him inoperable last month, and doctors advised to bring him home where he could die surrounded by loved ones, instead of with strangers in a hospital.
The pair fought the decision to bring Messiah home until the end, seeking second, third and fourth opinions from hospitals as far as Philadelphia.
“It’s emotional. We don’t want him to suffer more, though, you know?” Castaneda said. “The last few days it seems like he is suffering, and I don’t like that. … I’m glad he’s home with us though. I’m very, very grateful for that.”
They also have to focus on their little girl, 3-year-old Serenity, who has began stuttering over the past few weeks and will be in therapy with the rest of the family soon.
So Messiah came home to El Centro on Friday, was removed from his life-sustaining medication, and doctors said he would likely only live one hour.
However, Messiah was “a fighter,” as his dad said, and enjoyed a lifetime of “firsts” up until 6:52 p.m. Monday when he succumbed to his fight.
He tasted everything from melons to icing on his birthday cake to bananas, which he loved.
He happily had his first bath after months of just being wiped down by nurses. He saw the sun and the sky and even wet his parents’ couch like any other baby.
“We’re not at peace with it because, I mean, we never will be,” Lucio said. “But, like I feel if we’re sad around him, he’s going to feel the sadness, so we kind of have to embrace the moments that we actually have here with him.
“We want him to feel happy, hear everybody laughing and giggling, and smelling food, taste different foods and hear different noises, as opposed to him being in the hospital hearing the machines and no noise whatsoever. Here, he hears everybody laughing, yelling. We’re happy that he’s home but not happy that he’s going.”
Home is where the heart is
Messiah’s heart rate even improved when he first came home. His parents rarely slept as they treasured as many moments with him as they could.
“I don’t want to miss anything. I’m afraid if I slept, he won’t wake up. ‘Oh Messiah,’” she said, gazing at him Monday.
While Messiah initially responded well to the move, his system began to incrementally shut down. He began crying for hours on end Sunday and woke up markedly worse Monday, at times quieting to a rhythmic baby murmur and struggling to stay conscious.
“He’s tired but doesn’t seem to want to close his eyes completely,” she said Monday, watching his wide and tired eyes absorb the warm home life.
Lucio and Castaneda whispered encouragement to their embattled son throughout the day, knowing soon he would exhaust himself, pass out and not wake up.
“He’s going to be OK. We’ve already said what we needed to say again. He’s still holding on though. He still wants to be here. ‘Huh buddy? We love you bud. Your sister loves you very much, too.’” Castaneda told his son. “‘If you’re tired, it’s OK.’”
His parents smiled at him, tenderly kissing his visibly exhausted body as they made casts of his hands and feet during his last hours.
‘The sun is not bright’
Hospice of Imperial Valley founder Linda Marrs and nurse Mariana Tellechea provided needed support to the weary family by helping to check his heart rate, answering questions as to whether his changing smell was normal, and giving them breaks to take showers.
Lucio changed his diaper just like any day Monday, knowing it would be one of her last times to do so. She knew by early afternoon that he likely only had a few hours left.
Serenity spun in circles that day, repeatedly singing a song she made up with the only line, “the sun is not bright.”
“She doesn’t like it when we cry, she says our eyes are leaking,” Lucio said. “We talk to her and say he’s going to go to heaven. We have to use the words death and dying. ‘Is he dying yet mom? I don’t want him to go be with Jesus in heaven.’ She doesn’t understand.”
Lucio and Castaneda moved into a different room as Messiah began to show signs of exhaustion. Family members stayed respectfully nearby, the room at times silent except for the sound of medical machines. Those too soon quieted as Messiah’s long battle ended.
His family signed messages to him on shiny red heart-shaped balloons which they released into the sky after he passed “since he has half a heart now, when he goes to heaven, he’s going to have a full heart,” Lucio said.
“He’s tired. He’s ready, but we’ve said our goodbyes,” she said. “We’ve told him it’s OK for him to go now, he doesn’t have to hold on.”
Staff Writer Chelcey Adami can be reached at 760-337-3452 or firstname.lastname@example.org
Ways to help
There are multiple fundraisers being held to help Messiah’s family offset funeral and medical costs.
Carne asada plate fundraiser — Place orders by calling Amanda Lucio at 760-791-3138 or through “Messiah’s Heart Battle” Facebook page. Plates are $8 and can be picked up between 11 a.m. and 3 p.m. Friday at 3923 Paul Robinson Court in El Centro.Red heart balloons will lead the way there, starting from Lucky’s Chinese Restaurant on Fourth Street in El Centro.
Bake sale — 10 a.m. to 3 p.m. in front of Jalapeños Mexican Restaurant in Brawley on Friday and Saturday.
Car wash — at the El Centro Sonic 8 a.m. to 2 p.m. April 20.
Donations — A GoFundMe account for the family is also at www.gofundme.com/23yqzw.
Services are Tuesday and Wednesday, and the parents are requesting that those attending wear white instead of black.
The address to pick up the carne asada plates was corrected in this article.