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Jordan's Story: A Lurie Children’s Record Recovery Time

April 13, 2022

During July of 2021, Jordan, then 13, had been enjoying her summer break— spending time outside with her friends and older sister, but kept experiencing persistent flu-like symptoms. Having grown very fatigued, her mom, Michelle, brought Jordan to their local emergency room, concerned Jordan may be dehydrated. After the local ER ran a series of tests and labs, Jordan and her mom received life-changing news. Jordan’s flu-like symptoms were a result of heart failure.

Soon after, Jordan was rushed to Ann & Robert H. Lurie Children’s Hospital of Chicago, home to one of the top pediatric cardiology and cardiac surgery programs in the country, and was admitted to the state-of-the-art Regenstein Cardiac Care Unit. To help support Jordan’s heart function, the cardiac critical care team inserted a central line for intravenous medications but it soon became clear that she would need further intervention. The next day, Jordan underwent surgery with Dr. Sunjay Kaushal, Division Head of Cardiovascular-Thoracic Surgery, to have a Ventricular Assist Device (VAD) implanted.

Lurie Children's cardiovascular-thoracic experts rely on VADs, or mechanical pumps, to help support heart function and blood flow for pediatric patients awaiting heart transplants and for patients experiencing severe heart dysfunction. Lurie Children’s Ventricular Assist Device Program, which supports children with a broad range of conditions, has implanted VADs in 54 patients in the last five years. Nearly one-third of patients who receive a heart transplant at Lurie Children’s are supported to transplant on a VAD.

“The cardiovascular-thoracic surgery team inserted an adult-sized VAD that fit inside Jordan’s chest,” said Dr. Anna Joong, Medical Director of the VAD Program. “Since her body had been working overtime before she arrived at Lurie Children’s, she had lost a significant amount of weight and strength. For Jordan, the goal of implanting a VAD was to help maintain heart function and for her to get healthy before determining if she would need a new heart.”

After receiving her VAD, doctors confirmed that Jordan had dilated cardiomyopathy (DCM), a condition in which her left ventricle, the heart's main pumping chamber, becomes enlarged and weakened. Some patients with DCM see improvement in their heart function after being on a VAD, so doctors decided to wait to see if her heart function would improve while on the VAD.

Jordan faced a few serious obstacles after surgery, overcoming blood clots and a stroke in the week following. Her Lurie Children's Heart Center team was there every step of the way. Her parents found comfort in the impressive team supporting Jordan, as well as in their faith. Jordan made a full recovery after her stroke and her journey consistently trended upward from then on.

Adjusting to Life with a VAD

The mechanical pump connected to Jordan’s heart was now part of her life 24/7. Her heart continued to beat on its own, but the VAD took over most of the work to support blood flow to her organs. 

"The VAD was difficult to live with, but it did its job," Michelle remembers. With the VAD, Jordan began taking walks around the Regenstein Cardiac Care Unit (CCU), and slowly built up her stamina. Members from the Lurie Children's VAD program trained her parents so that once she became healthy enough, Jordan would be equipped to resume life at home. In the fall, the VAD team also trained staff at Jordan’s school so she could have the proper support to return to school.

“It was scary at first,” says Jordan, “But I felt like a VIP because I always had a team of teachers and close friends supporting me when I walked down the hallways.” Jordan returned to school for half-days and joined her fellow bandmates to play the flute in the stands during at her local high school’s basketball games.

While on the VAD and waiting to see if her own heart would regain function, Jordan worked with an exercise physiologist from Lurie Children’s Cardiac Rehabilitation team. The goal was to improve her strength and endurance while monitoring her heart. Even though the VAD was helping Jordan to get stronger, doctors determined that it was not improving her heart’s condition. Her care team decided that her best option would be to enter the United Network for Organ Sharing (UNOS) waitlist for a heart transplant.

Record Recovery Time

In February 2022, Jordan's family got the call they had been waiting for: Jordan was offered a heart. With Jordan in good health, she was ready to undergo the surgery.

After her successful heart transplant with Dr. Michael Mongé, Surgical Director of the Heart Transplant Program, and Dr. Osama Eltayeb, Attending Physician of Cardiovascular-Thoracic Surgery, Jordan began a speedy recovery. On her third day post-transplant, she was walking around the Heart Center, impressing her care team with her rapid progress.

On day nine, Jordan had a biopsy on her new heart to test for signs of rejection, which Lurie Children’s heart transplant patients do not usually undergo until two weeks post-surgery. And remarkably, on her tenth day post-surgery, Jordan walked herself out of the hospital, and officially became the quickest recovery of any heart transplant patient at Lurie Children's. Her family continued to support Jordan’s recovery at the Ronald McDonald House near to Lurie Children’s for two weeks before returning home.

“We know from research that the healthier patients are going into a heart transplant, the better they do afterwards,” said Dr. Joong. “Those months that Jordan’s heart was supported by a VAD allowed her body time to heal from her severe heart failure. When you combine that with a teenager who is so full of life and personality, strong both inside and out – she just flew through her transplant recovery.”

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