(Day 8) Parents hope for miracle for their little angel

Doctors didn’t expect Lorenzo Tamez to live four days.

He has lived four months.

Doctors asked his parents to sign a “do not resuscitate” form.

They refused.

Lorenzo has flat-lined four times.

And four times, he has survived.

His illness has brought challenges, including financial and emotional hardship, but his parents can’t imagine life without him. They struggle every day to keep him alive, while hoping for a miracle. (Watch "The Tamez Family," a Monitor multimedia presentation.)

Lorenzo was born July 22 with trisomy 13, a genetic disorder that changes the molecular structure of every cell in his body. It occurs in about one out of 10,000 newborns, according to the National Library of Medicine.

More than 80 percent of children with trisomy 13 die in the first month, said Dr. Allan Mercado, Lorenzo’s pediatrician.

Life has not been easy.

His intestines were deformed and required surgery. He can’t swallow, so he has a feeding tube. His body sometimes forgets to breathe, so his parents must give him oxygen and monitor his each breath. Because his body can’t regulate his temperature, little Lorenzo has to be in an air-conditioned room at all times to keep his body temperature from shooting to 102 or 103.

He also has a cleft lip and palate.

“He’s been having a lot of problems with seizures, heart conditions,” Mercado said. “He’s lucky to be alive.”

Round-the-clock care

Despite all of his problems Lorenzo smiles.

He responds when his parents talk to him. He grasps their fingers in his little hands. That’s enough to give his parents hope that some day they might be able to find some help for their little boy.

The family longs for more information about trisomy.

“I would love a doctor who knows trisomy,” said Imelba Castro, Lorenzo’s mother. “He can tell me, ‘This is what you can expect in the future.’”

Castro has asked Mercado to allow Lorenzo to travel out of the Rio Grande Valley for treatment and evaluation, but the doctor has refused, saying such travel could put Lorenzo at more risk for infection.

Mercado said he has set up appointments for Lorenzo and his family to meet with specialists, including a geneticist, to learn more about the baby’s condition. Unfortunately most of the appointments have been missed or cancelled due to Lorenzo’s frequent hospitalizations, he said.

The little boy needs round-the-clock care, which means that Castro and her husband, Manuel Tamez, get little sleep. They take turns at night watching over their little angel, making sure he takes his next breath.

“There’s not a moment that we can leave him,” Castro said.

‘They want Mommy back’

Castro fainted once after Lorenzo stopped breathing. And since his birth she can’t recall having 15 minutes to herself. Caring for Lorenzo is an all-consuming task that doesn’t leave room for personal time — or even for their other two children.

Alexis, 3, and Adan, 2, have trouble understanding why Lorenzo has all of their parents’ attention.

“They want Mommy back,” Castro said.

Alexis and Adan missed their joint birthday party this year because Lorenzo had to be admitted to the hospital.

Instead of playing outside and going on trips to South Padre Island like they used to, Alexis and Adan spend most of their time in the family’s living room. Their parents can’t leave Lorenzo alone to take the children outside to play.

“It’s the little ones that get affected,” said Niña Enriquez, the family’s social worker.

The other day Adan visited his grandmother and started to cry when they arrived home.

“No, Papi!” he screamed. The little boy wanted to go out — he wanted to go someplace new. Although a quick trip to a corner store satisfied Adan’s need for adventure, his tears broke his mother’s heart.

Compounding the problem is that when the children are home there is little space for them. Lorenzo’s equipment takes up most of the space in a back room of the trailer where the children used to play. Alexis and Adan used to play in the little girl’s bedroom, but since Lorenzo needs a quiet and germ-free environment and the room is next to his, they can’t play there. That leaves the living room or the kitchen.

Castro dreams of a time when Alexis and Adan have their own space to play.

“They don’t have space or freedom,” Castro said. “It’s all changed for them.”

‘A purpose for this little boy’

The family also worries that as Lorenzo grows he will require more and more equipment, and that the family will simply run out of space in their small trailer. And while many of his medical needs are covered by Medicaid — some of the equipment the baby needs isn’t, like a mechanical crib that would keep Lorenzo’s head elevated to help his apnea and other breathing problems. He now spends his days lying in his crib, propped up on a pile of pillows.

He also remains separated from his siblings because the family only has two window air conditioners in their trailer — neither in rooms where the children play.

Medicaid covers a nurse to care for Lorenzo during the weekdays, but when the nurse gets sick or goes on vacation, or when Lorenzo is in the hospital, she doesn’t come. Tamez misses a lot of work to care for his family, putting a financial strain on them. They sometimes have trouble paying rent and other bills, and they worry what would happen if their electricity were to be turned off.

And while the prognosis for a healthy, normal life for Lorenzo is slim, the family still prays that life will turn around.

“You don’t know with this illness,” said Enriquez, the social worker. “It all depends on this little guy, but there’s a purpose for this little boy.”

Castro, meanwhile, draws all the strength and support she can muster.

“I just ask anyone and everybody who could, to pray for him,” she said, “and to keep my other kids in their prayers and for me to be so strong.”

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Paige Lauren Deiner covers features and entertainment for The Monitor. You can reach her at (956) 683-4425.