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Parents struggle financially with newborns heart condition

by F.T. Norton, Appeal Staff Writer

Crystal Aguilar’s birth on July 17 was anxiously awaited and celebrated.

But the joy lasted only four days when doctors discovered Carson City residents Todd and Marisela Aguilar’s fifth child was born with a crushed aorta and a hole in her heart.

“From that point on we were rolling,” said Todd Aguilar, 37.

The baby was rushed to St. Mary’s hospital in Reno by ambulance suffering from heart, liver and kidney failure. The news from St. Mary’s wasn’t good.

“They said ‘You are probably going to lose her,'” Aguilar recalled.

Within two hours, Crystal was on a flight to Lucille Packard Children’s Hospital at Stanford University Medical Center in Palo Alto, Calif. Her parents joined her the following day.

A week later Crystal underwent an 11-hour surgery to repair the damage.

Although the surgery was a success, she’s not out of the woods yet, Aguilar said.

“She can’t breathe on her own,” he said. “They’ve taken her off the ventilator three times and each time she stops breathing.”

Until she is able to breathe on her own, she will remain at Lucille Packard.

While Todd stays home to care for the other children — Allen, 14; Adriana, 6; Kevin, 4; and Yesenia, 2 — Marisela is flying back and forth from California to be with Crystal.

The unexpected costs are taking a financial toll on the one-income family.

“The tickets are $80 one way, and since we don’t have a car, driving is out of the question,” Aguilar, a information technician with the state’s Public Employee Benefits Program, said.

While Marisela is in California, she is provided lodging by the Ronald McDonald house. The baby’s medical care is paid for by Medicaid.

Aguilar has used up all of his vacation days, and a generous co-worker donated three of her days so he could have a full 80 hours for time he spent in California by his daughter’s side.

“Despite all of this, we can’t lose our grip here in, Nevada,” he said.

Aguilar said emotionally the family is devastated.

“It’s just horrible,” he said. “It’s especially hard because she’s so small, she’s so helpless. There’s not much we (as parents) can do except follow the word of the doctor.”

With all the uncertainties surrounding Crystal’ s condition, there is one thing her parents do know — they dearly love the little girl with the jet black hair and blue eyes.

“She’s the most beautiful baby,” Marisela said Tuesday, adding with a chuckle, “of course, every parent says that, don’t they?”

YOU CAN HELP

Donations can be made to the

Crystal Ann Aguilar Medical Fund

Bank of America Account No. 004967550602