For much of the past two years, Grace de Valle has been at the foot of her son Mauricio’s bed, sleeping no more than four hours a day in between medical procedures and visits to the doctors. But she has never lost her optimism.
And as the child struggles to recover, he and his parents could use a helping hand.
The saga began in Panama, where a well-known specialist in neonatal care, Dr. Mario Vega Rich, told her that she was losing amniotic fluid. The fetus showed signs of hydronephrosis —a threat to the kidneys— and was also developing a condition called posterior urethral valves, an abnormality of the urethra, the tube that drains urine from the bladder to the outside of the body.
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In hopes of saving the fetus, de Valle and her husband, both Mexicans living in Panama, came to Miami in October 2014 so she could see Dr. Rubén Quintero, a world-renowned surgeon. Quintero was then director of Jackson Memorial Hospital’s Fetal Therapy Center, which treats infants facing life-threatening conditions.
Quintero’s examination showed that one of the fetus’ kidneys was missing and the other was very small.
“I was about to abort,” de Valle recalled. “They told me the fetus was not a candidate for surgery, that there was nothing to be done for him.”
She was 5½ months pregnant. She spent the night crying.
Then she asked Quintero whether people could live with just one kidney. And so began the miracle.
Quintero performed two in-utero surgeries, despite the risk that the fetus could die or fail to develop. The results were positive, and Mauricio was born about nine weeks premature on Dec. 16, 2014. But he had a kidney that only functioned at 65 to 70 percent capacity —not enough for a normal life— and he needed a new one.
I was about to abort. They told me I was not a candidate for surgery, that there was nothing to be done for him.
Grace de Valle, mother of Mauricio
On Nov. 11, de Valle received the call that a donated kidney had been found for Mauricio. The next day, a team from the Miami Transplant Institute — a joint effort by UHealth/Leonard M. Miller School of Medicine and Jackson Memorial Hospital — performed the eight-hour transplant surgery.
“My family in Mexico said a Mass in the name of the anonymous donor. We know only that he was a 10-year-old boy,” said de Valle, grateful to the parents who donated the kidney and other organs that also helped save lives besides Mauricio’s.
“Now we know for sure the importance of being organ donors,” said de Valle, who had been ready to donate one of her kidneys when the donated organ arrived. She and her husband remain on the list of potential living organ donors, and she also has donated bone marrow. (The website www.trasplantesyvida.org and www.unos.org say that kidneys are the organs most often donated by living donors. Other organs that can be harvested from live donors include parts of the lungs, liver, pancreas and intestines.)
Mauricio is recuperating well, is active and plays a drum recently given to him. But he keeps his mother very busy. She has to make sure that he receives the exact dosages of medications and goes to his therapy and treatment sessions. He is still fed through a tube.
Everything is a challenge for him — eating, walking, moving. But he’s a fighter, and he always comes out ahead. I nominated him because he’s extraordinary, and his mother is alone with him.
Arlene Weiss, a physical therapist at Jackson Rehabilitation Hospital who nominated Mauricio for Wish Book
“For Mauricio, everything is a challenge — eating, walking, moving,” said Arlene Weiss, a physical therapist at Jackson Rehabilitation Hospital who nominated him for Wish Book. “But he’s a fighter and always pulls through. I nominated him because he is amazing and because his mom is here alone with him. All of her family is in Mexico and her husband is an engineer who works for a company in Panama.
“It’s a difficult situation and I wanted to do something to help,” Weiss said.
De Valle said Mauricio’s top wish would be to see his father, Jesús Sánchez, an engineer who has continued to work in Panama so he can afford to pay for two rents every month —the family’s home in Panama and the Overtown apartment where the mother and Mauricio live.
Sánchez tries to come to Miami every four months, and he was here for the transplant surgery. He has a master’s degree and hopes to find a job in the United States. De Valle cannot work because the boy requires constant attention.
The family could use assistance with the rent, toys and medical supplies such as gloves, masks and alcohol wipes. Mauricio also needs orthopedic shoes because he uses a walker.
De Valle has only words of thanks for the help she and Mauricio received from the team of kidney specialists at Jackson, from the Ronald McDonald House in South Florida —which welcomed her during the 3½ months that Mauricio was in intensive care— and from the friends who have supported her at time when her relatives could not be here.
How to help: Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans) Read more at MiamiHerald.com/wishbook.
How to help
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans.) Read more at MiamiHerald.com/wishbook.