A brave boy named Alton Jace

Alton’s latest photo at four months. Six surgeries within his first three months to treat a condition called ‘lymphatic malformation.’

By Cristina DC Pastor

In the humid morning of May 18, a heavily pregnant Amanda Alvaro was scheduled for a Cesarean section. Together with her husband Fred, the calmest person in the family, they drove to New York-Presbyterian Morgan Stanley Children’s Hospital praying for a safe delivery andhoping for the best.

She found out on her 29th week that her pregnancy was in distress. Her doctor had spoken to her about a condition called “lymphatic malformation” (LM). It’s when a body’s lymphatic system – which maintains the balance of fluids in the body — develops abnormally during the pregnancy.

“A bunch of cells unfortunately went rogue,” said Amanda, a New Jersey licensed social worker, trying to understand what this condition is about. Fred, who is of Italian descent, is an elementary school teacher in Staten Island. In LM, as they learned from their doctor, masses of tumors can grow anywhere on the body. In the case of their infant, it formed around his neck.

The information presented by her doctor was frightening. “As the mass continued to grow, it could eventually push against his trachea, which would make breathing very difficult. It could affect his tongue and mouth to the point where he wouldn’t be able to swallow. The mass could make him go into distress. Everything was so scary.” To the couple, terminating the pregnancy was never an option.

Little gremlin

When Alton Jace Villafuerte Alvaro finally came out at 8:31 a.m. Amanda was thrilled to hear him cry. “He sounded like a little gremlin, and I knew those noises meant he could breathe!”

Amanda and Fred Alvaro with their first-born.

Due to his precarious condition, he was immediately taken by the doctors to be intubated in order to secure an airway in anticipation of breathing issues. He stayed at the neonatal intensive care unit (NICU) for 84 days and during that time they were to see him.

It was love at first sight.  The parents did not see the swollen mass below his face creating anenlarged jawbone eclipsing his neck. They saw a baby with the friendly eyes of his father when he smiles and the Villafuertes’ lush hair. The couple gave Alton – named after his two grandfathers Albert Villafuerte and Tony Alvaro — the adoring look of grateful parents.

Amanda explained what LM means in the life of her first-born.

“Due to the mass invading his tongue, Alton has a tough time with oral activities. At birth, his tongue was double the size and blue. The medication he has been taking (Sirolimus) has decreased the size drastically. Still, he cannot eat anything by mouth; he drinks my breastmilk through the g-tube. His ability to suck on a pacifier has improved, though.”

Moreover, since barely any air passes his vocal cords, Alton cries without any sound. “Another reason you have to keep an eye on him,” she added.

“He sometimes has trouble turning his head back and forth, because the mass is heavier on one side. We have to turn his head for him when lying down. We’re hoping that physical therapy and speech therapy will improve these areas where he struggles.”

Alton is fortunate to be surrounded by a coterie of caring Pinay nurses, led by his grandmother, Belle Villafuerte, a retired RN. Belle was the president of the Philippine Nurses Association-New Jersey from 2014 to 2016 and is one of its staunchest leaders.

“Due to my mom’s extensive background in nursing and being a member of PNA-NJ, we have a lot of connections with nurses who are good friends with my mom and have all volunteered to help,” said Amanda. “My mom was actually the reason we were able to take Alton home. Since she was a nurse and had seven years’ experience in the NICU, the doctors were comfortable finally letting Alton come home, knowing my mom would be there to care for him.”

Alton with grandma, retired RN Belle Villafuerte.


In all other areas of development, Alton is “thriving.”

Said Amanda, “He’s of typical height and weight, and is very strong, very alert and aware. He’s able to hold onto things, able to track movement, able to react to people’s faces, gets startled with loud noises — all the things an average baby can do.”

The mass around his neck appears to be shrinking, she said further. The family anticipates another round of sclerotherapy – a procedure where medicine is injected in the veins to reduce swelling — and possibly another “debulking surgery” to get rid of as much of the mass as possible. When these procedures are carried out, the family is confident the tubes will become unnecessary and Alton is on his way to a more normal life.

It’s been a “wild” four months with a lot of ups and downs, she said referring to Alton’s six surgeries within his first three months.

“I never imagined I would be going home with a son who has to breathe and eat through tubes.” There is no categorical cure, she added. Just a series of therapies and procedures to shrink the mass and keep it under control.

Filled with optimism, Amanda maintained, “Alton is absolutely worth it.”

She said, “When his little hand grasps my finger or he smiles at me the moment he sees me, my heart melts. Alton is wonderful just the way he is. He is always happy, always smiling, always content. He sleeps through the night and barely cries. He can literally lay in his crib for hours, perfectly fine just watching his mobile toy or little aquarium. He brings such joy and light to our lives and through it all, I am so blessed to have him.”

© The FilAm 2021

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