Broken-hearted mother finds comfort in new children's palliative care team

Jolly Lyuado held up a picture of her son, Ari, who died just weeks after he was born. In the corner are donations for other children in the hospital.
Jolly Lyuado held up a picture of her son, Ari, who died just weeks after he was born. In the corner are donations for other children in the hospital. submitted

Jolly Lyuado still cries when she cradles the tiny plaster hands, no bigger than a violet and just as delicate.

The casts reveal the little fingernails, the curve of the miniature palm of her son Ari Izrayel Lyuado. His name, a pastor told her after his too short life ended, means "lion's heart."

His mom calls him her angel.

Jolly Lyuado was thrilled when she found out she was going to be a mother for a second time. She was 26; in a good relationship with her fiancé, Jeff Spry; her mom had recently moved up from Florida; she was working as a waitress; her other son, Antonio, was in school.

It seemed like a good time.

Her 18-week checkup revealed devastating news. A portion of the baby's brain had not developed. He had spina bifida and a host of other medical problems that were detailed by doctors on several single-spaced sheets of paper. Even if Lyuado was able to carry him to term, he probably would live only minutes.

"I was beyond depressed," she said.

Her first impulse was to end the pregnancy. She called nine hospitals, but all them refused to perform surgery because she was too far along.

At the time it seemed the worst possible news. The joy of waiting for another child turned to despair.

But in those next few days and weeks, Lyuado found the strength to be the best mother she could be.

She opted for a C-section, even though there would be a long recovery for her, because it would be easier on her baby.

"My son was going through things 10 times worse than me," she said. "As a mom you want to protect your kids."

Ari came into the world on Feb. 17, 2011.

"He was beautiful, he was amazing," she said. She cradled him and marveled at his every breath and waited for him to die. Minutes passed, then hours came and went, and then days.

"We hadn't even bought one outfit for him because we didn't think he was going to make it," she said.

The newly formed palliative care team at Kentucky Children's Hospital stepped in to help the parents, providing them with clothes. comfort and guidance. Lyuado said she doesn't know what she would have done without them.

Mother and father stayed with the baby around the clock. His brother got to hold him. Lyuado's phone is filled with pictures of her second-born.

A team made up of nurses, social workers, hospice experts and a doctor helped the family prepare for the inevitable good bye. When Ari died on March 8, 2011 they made the tiny casts of his hands and ink prints of his feet. They helped Lyuado wrap them in bubble wrap.

She left behind a bag with one of his outfits at the hospital. The team held onto it for Lyuado until she could stand to reclaim it. She keeps it tightly sealed. Ari's scent still lingers.

The team's work, Lyuado said, helped her know her son would not be forgotten. They honored his life, no matter how brief.

Dr. Horacio Zaglul said losing a child is traumatic, but the team can offer comfort. The team's efforts, he said, "demonstrates to the parents that the child is not just a number or statistic, that they will be remembered."

For Lyuado, Ari's short life had a long-lasting impact.

"He was the strongest person I ever saw," she said. "He showed strength to me and to the world. I can't be ungrateful for the time we had."

Not that it has been easy. Lyuado and her fiancé broke up, each retreating from the other in their grief. She is getting counseling. She keeps Ari's ashes in a wooden box, topped by a lion. She couldn't stand the thought of him being alone in the ground, she said.

The tears still come easily. But she sees meaning in it all that she didn't see before.

"It is a total God thing," she said.

She still feels Ari with her. She doesn't quite understand all the messages but knows there is a divine plan in that her second son died on the birthday of her first.

Having Ari for only a while was the plan all along. All through her pregnancy, she said, Antonio would doodle the same family portrait. It showed him, his mother and Spry on the ground, holding hands. Baby Ari was always on a cloud with God.

Lyuado is back working as a waitress. She is volunteering with March of Dimes to help neonatal units supply clothes, diapers and other newborn things for parents who, like her, have a need. She looks up hospitals on the Internet and calls to see if she can help. She has been to hospitals hours away to make deliveries. She's working toward creating an official non- profit foundation in her son's name. The son she feels watching over her.

"God gave me the gift of looking into the face of my guardian angel," she said.

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