HAGÅTÑA (The Guam Daily Post) — Seven-year-old Ayan Pangelinan has been living with a heart condition since birth, but now he needs a new one.
“He is currently an inpatient at UF Health Shands Children’s Hospital in Gainesville, Florida, waiting for a heart,” his mother, Antonia Pangelinan, told The Guam Daily Post.
At 20 weeks pregnant, Antonia Pangelinan discovered through an ultrasound scan that her son would be born with a heart defect called transposition of the great arteries, or TGA, and a few other heart defects that required three scheduled surgeries.
“So we were referred out to a children’s hospital and I left out earlier to give birth, so he could have his surgery there right after,” Ayan’s mom said. “He’s single ventricle, which led to cardiomyopathy, which is heart failure.”
Dealing with this since birth, the family traveled back and forth from Guam to Los Angeles for Ayan’s cardiac care, but in 2021 they decided to leave Guam and relocate to Florida.
“We just couldn’t travel anymore. I have two older children and my dad and sister live out here in Florida, and so we just made the decision to relocate,” Antonia Pangelinan said.
Ayan Pangelinan was doing well and living a normal life as if nothing were wrong.
“In all the time leading up to this, … he just started declining in May of this year. Previously, he was just a normal happy kid with a few doctor’s appointments and a few surgeries, but after that, he always bounced back and was normal, replayed, went to school and is currently in the second grade. It was as if nothing was wrong. If you looked at him, he doesn’t look like anything is the matter with him,” his mom said.
In March of this year, Ayan Pangelinan was diagnosed with a heart block that required a pacemaker. It was then that his health began to take a turn.
“Then, after that surgery, immediately he would be sick every day. He’s not that energetic kid anymore. All he wanted to do was stay home. He didn’t want to go to school. When we brought him in a few times, … his heart function was at 11%. He was then hospitalized. He was released one time over the summer. He was in outpatient and went back to school for the first couple of weeks, and then just at the beginning of this month he needed a heart transplant. Where they were like, ‘He’s too sick, he needs to be on the list,’” his mother shared.
Heart transplant
There are three different levels for the heart transplant listing. Status 1A involves children who are under inpatient care and require medical devices to keep them alive until they get heart transplants. The next level includes children who don’t need as many devices, but are still in critical condition. Then there are the children who are under outpatient care and need minimal devices to sustain them until a transplant.
“We don’t know Ayan’s status as of now. There’s a device that is called LVAD (Left Ventricular Assist Device) that he can use, it’s basically like you’re carrying your heart with batteries around. He can use that to keep him going until we get the call,” Antonia Pangelinan said. “He is on a vent, but he wakes up and answers yes-or-no questions and thumbs up and shows emotion. But he’s just not up and about.”
Currently, she said doctors are trying to stabilize Ayan Pangelinan so that he is in a healthier state to wait for a heart transplant.
“He’s not in a good place right now,” she said. “At this point in time, there’s a lot of rough days where it’s not as bad, but you know it’s not some things that you want to hear.”
Throughout the last seven years, Ayan Pangelinan has maintained high spirits despite his health.
“Ayan, you cannot keep that kid down. Through all of his surgeries, through all of his procedures, he always has a smile on his face. He always cracks jokes because he’s a comedian like his papa, but he’s always in high spirits, even now, intubated, but he’s awake, he’s still making the nurses laugh with his looks and gestures,” his mom shared.
The Pangelinan family is asking for prayers and welcomes those from Guam who’d like to send gifts to keep their son’s spirits high.
“ If everybody can just say a prayer for Ayan, that’s what he really, really needs. … Because prayers are powerful, and he really needs them now,” she said. “Ayan, he really loves Legos and putting things together and robots, Kinder (Surprise) eggs, oh my gosh he really loves Kinder eggs and space. He’s a mathlete, so he loves math and playing like a little mechanic and engineer.”
While Ayan Pangelinan waits for a heart, his mother hopes others learn from his experience and spirit.
“Show your love to one another because you never know. And go check when you’re pregnant because if I didn’t know about Ayan before, we would have lost him much earlier, but because we found out early, we are able to give him that chance at life,” she said.
While there are no fundraising efforts underway, if people would like to send a gift to Ayan Pangelinan to lift his spirits, they can do so by mailing to the Ronald McDonald House, Pangelinan Room 21, 2121 S.W. 16th St., Gainesville, FL 32608.
Ayan Pangelinan, 7, has been living with a heart condition since birth, but now he needs a new one.
