After countless hospital stays and years of medical tests and drug therapies, a sixth-grader receives the best Christmas present of her life.
Rose Hajjar was on stage in the middle of a play rehearsal when her parents walked through the door to tell the sixth-grader that her Christmas gift had arrived.
After 10 months of waiting, Rose was getting a new heart.
"The gift we wanted most this year was something we couldn't buy," says her mom, Joy Hajjar. "This is the ultimate gift, such an incredible blessing. We are just overwhelmed with gratitude."
Rose, who had three heart surgeries before age 3, has been on the heart transplant list since February.
Born with a congenital heart disease — and battling an illness known as protein-losing enteropathy — Rose has become all too familiar with hospital stays, sickness, medical tests and drug therapies.
Thanks to a combination of medicine and treatment at University of Michigan C.S. Mott Children's Hospital, however, she was able to stay active throughout the wait. Rose, also known as Rosie, celebrated her 11th birthday, was cast in the school production of "Beauty and the Beast" and enjoyed favorite activities like playing piano and spending time with her sisters, Jasmine, 10, and Dahlia, 7.
But the purple Vera Bradley crossbody purse she carried everywhere held a pump providing a continuous infusion of medication necessary for her body to function. And without a heart transplant, her health and quality of life would continue to decline.
Eleven days before Christmas, Joy Hajjar was sitting with her best friend in the family's home in Ottawa Hills, Ohio, when her phone rang with the special "alarm" ringtone she had assigned to Mott.
"At first, I thought it was just a regular call related to an appointment. But then they said, 'We have a match for Rose,'" Hajjar says. "We couldn't believe it was actually happening."
She, husband Elias Hajjar and Dahlia quickly headed to Rose and Jasmine's play rehearsal to deliver the news and share the moment as a family.
"Rosie just started crying. Everyone was crying," Joy Hajjar says. "The five of us got in the car and drove to Mott. We spent that time praying for Rose and for the donor's family."
Rose's grandparents, aunts and uncles waited with them at the hospital as she was prepped for surgery, sharing "laughter and hopeful excitement," Hajjar says.
"Friends and family stretching all across the U.S. and the world were praying with us, holding vigil all night," she says. "We felt wrapped in love and hope. We hope, too, that our donor's family felt the love and prayers that were sent up for them, by all the people they never knew."
That night, Rose underwent a 12-hour heart transplant surgery, led by pediatric heart surgeon Ming-Sing Si, M.D.
Pediatric heart physicians Kurt Schumacher, M.D., and Mark Russell, M.D., say Rose was a great candidate because medical treatment and her active life made her as healthy as she could be heading into surgery. She is progressing and will probably spend another couple of weeks in the hospital, but she's feeling well enough to eat her favorite food: grape leaves.
"The heart is recovering from the stress of the transplant and adapting to its new environment but is doing well and getting better," Hajjar says.
"There are some challenges along the way. But it's really miraculous."
Complex heart disease
There were no signs of Rose's heart problems during pregnancy, Hajjar says. So the couple were shocked when she was born with a "dusky" color that prompted local doctors to run a series of tests to check her heart.
A doctor came into their hospital room in the middle the night and drew a picture showing the anatomy of a normal heart and then what Rose's heart looked like. Only three of the four heart chambers had developed, he explained, and she wouldn't survive without immediate surgery.
Rose was diagnosed with the congenital heart condition hypoplastic right ventricle, in which the right atrium and right ventricle are underdeveloped. The defect causes inadequate blood flow to the lungs. Rose was rushed to Mott, which has an international referral center for children with complex congenital heart disease.
Three open-heart surgeries (called the Fontan) followed over the next few years to re-route her blood flow. She continued to get stronger and was living a normal toddler and preschool life, her family says.
But at age 5, Rose's routine lab work came back with concerning results — her blood protein had fallen to dangerously low levels. The then-kindergartner was diagnosed with protein-losing enteropathy, which meant her blood couldn't absorb protein or many other nutrients that her organs needed.
In 2016, Rose had a fourth surgery and was taking nearly 30 pills a day, but medicine and treatment were temporary solutions. By age 10, the condition had stunted her growth, caused masses in her liver and triggered daily joint and muscle pain, among other health issues.
"It took a major toll on her," Hajjar says. "Our doctors felt we had exhausted every option possible and that a transplant was the only way to help Rose. It was a difficult decision for our family, but her quality of life was continuing to decline."
On Feb. 6, Rose was listed for a heart transplant.
A special Christmas
The Hajjars, who own Toledo-area Mediterranean restaurant Poco Piatti and live near extended family, are used to a busy Christmas Eve and Christmas morning. This year will be a much quieter holiday spent at the hospital, since Rose's immune system is suppressed from the procedure and she can't have many visitors.
But it still may be one of the most special Christmases of all.
"Everything else seems pretty insignificant," Hajjar says. "We have a new chance for a healthy future for our daughter. We will take that over anything else. There is no greater gift."
Rose seems to agree. When a child life specialist asked her if she wanted to pick a Christmas present from the Mott holiday toy shop, her reply was simple: "I already got what I really wanted."
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