Amirah Orama – Heart Transplant

Amirah Orama

For one little girl and her loving parents, both the Heart Institute and Dream Big Studio have been nothing short of life-changing. This is Amirah’s story.

This interview was made possible with interpretation support from Maria Cecilia Q. Dancisin, Manager of the UPMC Children’s International Department.

“We’re Here Because of Faith”

In a bustling room in the Cardiac Intensive Care Unit at UPMC Children’s — with beeping machines and the chatter of masked medical staff moving to and fro — there is a quiet, precious moment of connection between a mother and daughter in the midst of it all.

Gladys leans in close to the tightly wrapped bundle of blankets in the hospital bed, and in a voice that can only be described as filled with a mother’s love, gently calls her daughter’s name.

“Amirah,” she says. It’s a name that Gladys and her husband, José, would later share means “princess,” “treetop,” and “one who rises.”

Amirah OramaThree days prior, 4-year-old Amirah received a heart transplant. While the road to this post-transplant moment was long, winding, and full of challenges for this family of three, José and Gladys’ warm smiles and irresistible optimism fill the hospital room as they talk about their journey.

“Amirah’s cardiologists in Puerto Rico told us that they didn’t have the resources to treat her on the island,” Gladys says. “They told us to find a big hospital with an excellent heart program in the United States. Titi Judy and Titi Myrna [Gladys' sister-in-law and aunt] started doing research, and they narrowed it down to two. One was UPMC Children’s. We contacted both, and UPMC Children’s was first to respond.”

The family received a phone call directly from Surgeon-in-Chief Dr. Victor Morell. They were surprised and delighted to learn that Dr. Morell personally knew Amirah’s cardiologist in Puerto Rico very well. All the pieces were falling into place, but for Gladys and José, it wasn’t merely a coincidence.

“In our family, we call it a ‘God-incidence,’” Gladys shares with a laugh. In their native Spanish, it’s a combination of two words: “Dios,” meaning “God,” and “casualidad,” meaning “coincidence.” Put them together, and it’s a “Diosidad.”

“God was there to facilitate it,” José and Gladys say. “God put everything in the right place.”

José, Gladys, and Amirah flew to Pittsburgh in January 2021. It would be eight long months of complex procedures and intensive care before Amirah would receive her new heart — before they would be sitting by her bedside as she recovered, telling this story.

They say, resolutely, “We’re here because of faith.”

Finding Joy in the Dream Big Studio

In the many months leading up to Amirah’s transplant, she and her family found reasons to smile, laugh, and escape their clinical world for a few minutes each day with the Dream Big Studio (DBS). José and Gladys remember when Daniela Ortega, one of the many Child Life specialists their family has come to adore, recommended Amirah watch the live bingo broadcast.

“Amirah, loves bingo,” José shares. “She loves all the different topics, and she is so excited when she wins a prize. We play bingo as often as we can. Over time, she built up a little collection of many bingo prizes.” He smiles fondly as he explains, “She keeps them all inside her little purple bag, which she wears over her shoulder like a purse, like a fashionista.”

Amirah OramaThere is no limit to the list of DBS programs that Amirah loves.

“She likes the cooking shows, all of the arts and crafts, the drawing and painting, and especially the music,” Gladys says. “She loves music and singing, and she especially likes when the music programs show little girls like her, singing.”

Among all the programs that bring creativity and fun to Amirah’s days, it seems that bingo is the family’s favorite. Even when Amirah can’t play bingo herself, playing on her behalf is now a special ritual for Gladys and José that makes them feel close to her when she isn’t awake. 

“In the middle of procedures, things get very, very stressful,” Gladys explains. “Sometimes, like now, she is asleep in bed, and there is nothing we can do for her. So, we watch the broadcast together and play for her. We’re still connecting with her, and when we play, it’s like she is playing, too.”

When Amirah can’t physically play, José and Gladys find ways to spread positivity to other patients and families on their floor. On Amirah’s birthday, the family asked Child Life and DBS if they could exchange the many points they had accumulated playing bingo for small prizes — which they could then distribute to all the other patients on the unit. After Amirah’s heart transplant, the family gave chocolates to be enjoyed by everyone who came to the room. Gestures like these are their way of spreading joy, and of teaching Amirah the spirit of giving.

Care That Comes From the Heart

When it comes to Amirah’s care team, there is one point that José and Gladys emphasize above all else.

“All of the doctors and staff listen to us,” Gladys says. “They are sensitive and caring. They visit us like we are family, they help relieve our stress. We have weekly care conferences where we talk about what’s going on with Amirah, they make time for us so that we can ask questions and understand.”

In cardiology alone, Gladys and José list countless physicians, surgeons, and nurses by name who have played critical roles in Amirah’s care. They also go on to name numerous individuals in supportive care, pastoral care, nephrology, pulmonology, dialysis, respiratory therapy, ECMO (extracorporeal membrane oxygenation), the International Department and child life who go above and beyond.

“They all play with her,” Gladys explains, “and they make her feel as comfortable as possible with her procedures, because they happen all the time.” Gladys shares that the nurses let Amirah “help” whenever possible, whether it’s taking off a bandage or holding a swab.

José laughs as he recounts a memory of when he assisted a nurse with a delicate process involving Amirah’s tracheostomy tube. “The nurse has to perform this process very gently and with great care, and while we were quiet and focused, Amirah all of a sudden says, ‘BOO!’ making us jump!” This kind of playful mischief, José says, is one of the many traits that make Amirah who she is.

“Amirah has such a strong personality,” José says. “She’s feisty. She likes to play, dance, and sing. She loves makeup, doing her nails, jewelry. She likes butterflies, bubbles, and especially mermaids.”

Knowing that Amirah would be spending her fourth birthday in the hospital, her doctors and the unit staff put together a birthday celebration for her, with a theme of Disney Pixar’s Moana. Because of their time spent getting to know her, it’s a theme they all knew she would love.

Amirah Orama Hospital WindowFrom bingo to birthdays, these moments of happiness and normalcy help families like Amirah’s get through the hard times. Gladys and José speak openly about the stress and anxiety that ebb and flow like the tide with Amirah’s heart condition. It’s a rollercoaster, they say.

But when your name means “one who rises,” and when you’ve got a personality as bright and infectious as Amirah’s, it’s hard for those around you to be anything less than optimistic.

“We stay optimistic, and so do the doctors and staff around her,” Gladys says. “These people are brave, kind, enterprising people, and together for Amirah, we can achieve great things.”

Surrounded by faith and family, there is no stopping this little princess from rising to the greatest heights.

The Best Gift Ever

In December 2021, Amirah and her family received the best news. With her recovery going well, she was able to leave the hospital and head to the Children’s Hospital Rehabilitation Unit! This is a very exciting step on Amirah’s journey to recovery.

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