Doctors quickly discovered the cause: the infant’s heart only had one ventricle (or lower chamber) instead of two, making it much harder to pump oxygenated blood throughout the entire body.
In addition to this rare heart defect, Valentine also has a condition known as situs inversus, in which the organs in her abdomen are positioned in a mirror image, or reversal, of normal anatomy.
These and other challenges led Valentine to receive a dual-organ transplant last summer at the University of Chicago Medicine. Today, the 35-year-old is thriving.
Valentine has since gotten engaged, enrolled in a doctoral program, and even climbed 94 flights of stairs to the top of a famous Chicago skyscraper as part of a charity event.
“I know I’m a bit of a medical miracle and a unique case study,” she said. “If I can put myself out there to help others learn how to treat patients like me, or help patients like me feel a sense of comfort because I made it this far, I’m always going to do that.”
Life-saving referral for organ transplant
To survive her congenital heart disease (CHD) condition, Valentine underwent her first open-heart surgery—called a Fontan procedure—before she was even two years old.
With her circulatory system successfully rerouted to improve oxygenation, she was able to experience a relatively normal (albeit closely monitored) childhood and young adulthood: swimming; riding horses; attending college and graduate school as an education professional; and becoming a mother.
But in July 2023, she started feeling “not quite right,” eventually going to a hospital with abdominal swelling and pain. Doctors found out that she been experiencing silent atrial fibrillation, an irregular heartbeat without any noticeable symptoms. The condition had caused her to develop blood clots in multiple organs.
Although medications and procedures got her out of immediate danger, a major concern loomed: Her heart and liver were failing. She was referred to UChicago Medicine, where she met with Valluvan Jeevanandam, MD, Director of the Heart and Vascular Center, and Michael Earing, MD, Chief of the Section of Pediatric Cardiology.
They acknowledged her case would be extremely difficult, but they brought in other experts and took on the challenge, performing imaging scans so they could construct intricate 3D models and work out how to make a transplant feasible with Valentine’s unorthodox organ placement and circulatory system.
On February 13, 2024—the day before Valentine’s Day and also National Donor Day—she learned she’d been accepted to UChicago Medicine’s heart transplant program. Soon after that, she checked into the hospital to begin her preparation.
Dedication to ‘prehabilitation’ before transplant surgery
While waiting for suitable donor organs to become available, Valentine walked four miles every day through the halls of the hospital at Jeevanandam’s insistence.
“When you’re a really hard case that not a lot of people will take, and you find someone who’s willing to treat you, you do whatever he says,” Valentine said, with a smile.
Jeevanandam and other members of her care team said her dogged “prehabilitation,” consisting of her daily walks and physical therapy workouts, was crucial to the success of her transplant operation and rapid recovery.
“She’s a young, active mother, and she had all these goals and things she wanted to get back to after her hospitalization,” said Allison Postel, PT, DPT, a UChicago Medicine inpatient physical therapist. “I didn’t have to sell her on the benefits of working hard to build strength; she really knew, so she was eager to do anything that we asked of her.”
Valentine’s young daughter visited regularly throughout her preparation and waiting process, playing enough charades and other games with the staff on the cardiovascular floor that she started naming stuffed animals at home after them. She still has a giant stuffed taco named “Nurse Nicole,” and Valentine and some of the nurses still text each other daily scores from online puzzle games they played together.