11-year-old girl receives lifesaving gift

January 28, 2019  //  FOUND IN: Michigan Medicine News,

Rose Hajjar received a new heart at Michigan Medicine last month.

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 was something we couldn’t buy,” said her mom, Joy Hajjar. “This was the ultimate gift, such an incredible blessing. We are just overwhelmed with gratitude.”

Rose, who had three heart surgeries before age 3, had been on the heart transplant list since February.

Rose was born with a congenital heart disease, which is the most common type of birth defect in the U.S., affecting approximately 1 out of every 110 children. On top of that, Rose had been battling an illness known as protein-losing enteropathy, meaning she had become all too familiar with hospital stays, sickness, medical tests and drug therapies.

Thanks to a combination of medicine and treatment at 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.

Special ringtone

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 said. “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 said. “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 said.

“Friends and family stretching all across the U.S. and the world were praying with us, holding vigil all night,” she said. “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., said Rose was a great candidate because medical treatment and her active life made her as healthy as she could be heading into surgery. In the month since, she is progressing well and is now home, reading, watching cooking videos on online and spending time with her family.

Complex heart disease

There were no signs of Rose’s heart problems during pregnancy, Hajjar said. So the couple was 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 a world-renowned Congenital Heart Center.

Three open-heart surgeries followed over the next few years to reroute her blood flow. She continued to get stronger and was living a normal toddler and preschool life, her family said.

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 said. “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 happy new year

The Hajjars, who own Toledo-area Mediterranean restaurant Poco Piatti and live near extended family, are used to a busy holiday season. This year was much quieter, spent in the hospital. But it was due to the greatest holiday gift of all.

“We have a new chance for a healthy future for our daughter,” Hajjar said. “We will take that over anything else. There is no greater gift.”

Click here to see updates of Rose’s recovery on her Facebook page!

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