Amirah Orama – Heart Transplant

Amirah Orama

Amirah OramaThe name “Amirah” means “princess,” and it’s fitting. When Amirah was a patient at UPMC Children’s Hospital of Pittsburgh’s inpatient rehabilitation unit, she loved to dress up in princess outfits.

“She wanted her nails done, the whole shebang,” says Amirah’s mom, Gladys, through an interpreter. “One day she dressed as Belle, another day Elsa, another day Anna from Frozen. She always wanted to dress as a princess.”

Amirah OramaAmirah was transferred to the rehab unit – known as the Children’s Hospital Rehabilitation Unit, or CHRU – in December 2021 to continue her recovery following a life-saving heart transplant at UPMC Children’s in September of that year. You can read about the first part of Amirah’s and her parents’ journey at Children’s here.

Before Amirah’s transplant, her parents, Gladys and Jose, were fearful – there were lots of unknowns, they say. Now with hindsight, they can say it was worth it. Amirah has made a good recovery. She is going to therapy. She’s active and alert. The fears have slowly receded.

Amirah spent about seven weeks at the CHRU – from December 2021 until February 2022. While she was in the hospital, she enjoyed going to the Healing Garden. She liked therapy because she could do more activities, her parents say. Because of the snow she could only go once, but she liked the playground at rehab.

“She used the playground as motivation for her therapy,” says Gladys. “The goal was to get to the playground.”

Amirah OramaOn Feb. 22, she left the CHRU for one more visit to Children’s to have a gastrostomy tube (G-tube) placed, and from there she was discharged to go home. A G-tube is a surgically placed tube that is inserted through the belly and brings nutrition directly to the stomach.

Amirah’s parents say that after her transplant, as she moved from floor to floor in the hospital, she seemed to feel different. She was attached to Mom and Dad at the beginning, but eventually was able to interact with more people.

“They saw how she gradually changed in her attitude, and her personality started developing,” Jose says. Then when they went to rehab, the same continued – she had to get to know people more quickly.

Amirah OramaAmirah understands that her apartment is home now. She has a special bond with Sylvan, a nurse who’s with the family most of the time. She also has a preschool teacher visit twice a week as well as speech, physical, and occupational therapy at home. Now she has her own room and her own toys. She started climbing and running, and she can go to the playground. She doesn’t interact with other kids on the playground because of concerns about Amirah’s immunity – but she communicates with her facial expressions and her eyes. Just like a princess would.

Gladys and Jose want to thank the donor’s family. “It is a gift beyond words, and Amirah has taken full advantage of it. It has given her the opportunity to live a full life,” they said. “We don’t know where the heart came from, but we are extremely grateful. The new heart that Amirah got, it lives on in Amirah and we’ll take good care of it. Our respect and gratitude to the family that donated the heart.”

Dante suffered from Alagille syndrome. Read more about his experience and treatment of his procedure at UPMC.
Read Dante's Story >>
Elena suffered from Sanfilippo syndrome. Learn about her undergoing the first clinical trial for her condition at UPMC Children’s Hospital of Pittsburgh.
Read Elena's Story >>