From Critical Aortic Stenosis to a New Heart: Angel's Story

As family and staff cheer, Angel hangs his name on a special wall in the Heart Center. Learn about Angel’s journey to celebrating a new heart.

Patient Angel at Johns Hopkins All Children's

Angel at Johns Hopkins All Children's

Published in Johns Hopkins All Children's Hospital - Latest News and Stories

It was the start of a new week, another Monday. But it wasn’t your typical Monday on the cardiovascular intensive care unit (CVICU) at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. Angel Jr. was anxiously awaiting his discharge orders to go home.

A little before 3 p.m., the 17-year-old, who just celebrated his birthday, walks out of his room into the hallway, surrounded by his family. His brand-new heart is beating in his chest.

“I feel amazing,” Angel Jr. says. “I honestly feel like a new person.”

The halls are filled with the sounds of shaking maracas and red pom-pom strings shimmying against each other. Angel Jr. walks past them, making his way to a special wall where patients hang their name upon discharge.

This patient and staff celebration is fairly new. It started in September of 2022 as an idea from June Morgan, R.N., and Beth Harris, R.N., who help support staff.

“I thought of how oncology patients get to ring the bell and celebrate a victory, and brainstormed with Beth on what we could,” Morgan says. “Now, not only do our patients have a way to celebrate this amazing milestone in their journey, but our staff also have a way to quantify the impact they have each and every day.”

From there, Johns Hopkins All Children’s interior designer, Veronica Burns, brought the idea to life.

“She was able to get the artwork that now is mounted on our walls with the ocean and whale scene. Our Child Life specialist then helped create the laminated sea animals for our patients to choose from to put their name on,” Morgan says. “It’s very special.”

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On this momentous day, it was Angel Jr.’s victory. He reaches up and sticks his name on the wall — his family is crying, embracing Angel in this emotional moment. It was a long journey to get Angel back on his feet.

Angel was born in Puerto Rico, and right away, his parents, including his dad, Angel Sr., noticed something wasn’t quite right.

“He was cold, just cold. We mentioned this to the doctor, and they said they were going to do some testing on him,” Angel Sr. says.

He never came back from those tests and was transferred to the hospital’s intensive care unit. There was something wrong with his heart. Angel Jr. had a condition called critical aortic stenosis, a type of congenital heart defect, which means his aortic valve is very small. Eventually, he was discharged, but then came the seizures because the heart wasn’t pumping enough oxygen to his brain. This went on for about three years, until one day — Angel Sr. had a very specific dream: move from Puerto Rico to the states to give his son a chance for better access to health care.

“I told my wife if something ever happened to Angel, I’m not going to be able to get through that,” Angel Sr. says. “It’s our duty to do something about it if they don’t have the staff to take care of him here.”

He was fighting for his son’s life. Angel Sr. made his way to Florida first, starting off living in a hotel room. With the help of friends and family, and through many trials and tribulations, the whole family finally made their way to Orlando, Florida, and eventually settled in Davenport, a central Florida community east of Lakeland.

“I spent five years in the states not even sleeping,” Angel Sr. says. “I would make sure Angel took his medication, and that he was breathing at night.”

Over the years, Angel Jr. responded well to medication. But by 9 years old, he needed an operation to expand his valve by dilating it with a balloon. That helped, but he wasn’t out of the woods yet. Doctors said he would eventually tire more easily, and his body would slow again as his heart continues to grow with his body.

“Angel was in sports. He played tennis. He went to school,” Angel Sr. says. “He sometimes got bullied in school, but he surrounded himself with good people.”

As time passed, as his doctor said, he tired easily. He would come home after tennis and sleep for hours. One day during tennis, he needed medical help, which led to a huge seizure that night. But the moment that brought Angel Jr. to Johns Hopkins All Children’s Hospital was his Homecoming night. His parents hesitated to let him attend but decided to let him go have fun.

“A friend promised to watch over him – but he got onto the dance floor and had a seizure in front of the entire school,” Angel Sr. says.

Angel’s heart was very sick. He needed a transplant. Angel Sr. asked the referring doctor where he would take his own child, and he replied, “Johns Hopkins.”

“Only severe cases get transplanted, and he had a severe case,” says James Quintessenza, M.D., co-director of the Johns Hopkins All Children’s Heart Institute and chief of cardiovascular surgery. “We felt with the heart muscle being as bad as it was, a heart transplant was his best option. The heart muscle was too stiff and would not relax to allow an adequate volume of blood to come in to be able to pump it out.”

Angel received his new heart just over a week after being admitted, the day before Angel Sr.’s birthday. The day after that, it was Angel Jr.’s 17th birthday. The timing of his new heart turned out to be the best birthday gift of all.

“He walked like he was born again,” recalls Angel Sr. “If I had a million dollars, I would break it up and give to all of the people who helped take care of my son.”

Angel Sr. even shares how the staff took care of him.

“One day I fell asleep on the couch,” Angel Sr. says. “The next thing I know I felt a blanket. One of the nurses put a blanket on me because she thought I was cold. That was even more confirmation we were in the right place.”

Angel is now followed by Alfred Asante-Korang, M.D., MRCP, FACC, director of heart transplantation, cardiomyopathy and heart failure at Johns Hopkins All Children’s Hospital, for any signs of heart transplant rejection. This includes a few procedures in the catheterization lab to test a small piece of heart tissue and echocardiograms. He also takes immunosuppressant medications, to help the body not reject his heart.

“Follow-ups are most intense in the first year, post-transplant,” Asante-Korang says. “Right now, there are no signs of rejection. He’s doing well and starting to play a little bit of tennis. Angel is a special kid. He has a great sense of humor and won everybody’s hearts in the CVICU.”

The expert pediatric heart transplant team gives kids and teens like Angel a chance to live out their dreams.

For Angel, that includes playing tennis again, going to college and pursuing his dream of becoming a musician.

“Singing makes me happy. Even in my saddest moments, music always makes me happy,” Angel says. “If you can dream it, it will happen in real time. You just have to work hard at it and make sure you’re there. Never give up.”

The Heart Institute at Johns Hopkins All Children's Hospital

Our experts provide comprehensive, compassionate care to children of all ages with congenital heart conditions in the Heart Institute at Johns Hopkins All Children's Hospital in St. Petersburg, Florida. We serve families throughout the greater Tampa Bay area and beyond.