Teen born with heart defect named honorary princess with the Knights of Babylon

Babylon is hosting a young girl named Lorelei born with half a heart as a guest princess this year. During her visit, she stops at the Children's Hospital with her super service dog to deliver heart pillows for some of the patients. Her dog alerts people when he detects her heart is about to stop beating. (Photo by Frankie Prijatel, NOLA.com | The Times-Picayune)

Babylon is hosting a young girl named Lorelei born with half a heart as a guest princess this year. During her visit, she stops at the Children's Hospital with her super service dog to deliver heart pillows for some of the patients. Her dog alerts people when he detects her heart is about to stop beating. (Photo by Frankie Prijatel, NOLA.com | The Times-Picayune)

Days before attending the Knights of Babylon ball on Thursday (Feb. 28) as an honorary princess, Lorelei McIntyre, 13, was already dressed like royalty as she sat in the lobby of Children’s Hospital in New Orleans with her service dog, a black lab named Mandu.

McIntyre’s strawberry blonde hair was pinned up under a bejeweled tiara that sparkled when sunlight broke through the clouds and streamed into the hospital’s new lobby.

As Mandu rested on a chair beside her, McIntyre hugged a navy-blue heart shaped compression pillow close to her chest. The pillow provides an extra layer of pressure that helps relieve the sensation of jolting if a cardiac patient like McIntyre coughs or sneezes while recuperating from open-heart surgery.

McIntyre was born with a congenital heart defect called Hypoplastic Left Heart Syndrome, which means she was born without the left ventricle to pump blood out to the rest of her body.

Doctors diagnosed the condition when her mom Michelle “Chelle” McIntyre-Brewer was 21 weeks along in her pregnancy, after McIntyre’s twin brother died in utero. When the family found that Lorelei had a chance for survival, doctors said she would have to undergo three reconstructive ventricle surgeries to prolong her life.

After the third painful surgery when she was five, McIntyre was given a compression pillow to apply pressure to the area of her chest that been opened for surgery. The pillow was too big for her small frame.

That was when she decided to learn how to sew and make a smaller version of the compression pillow, in the shape of a heart.

She explained that these pillows are easier for pediatric cardiac patients to hug. The hobby turned into a non-profit called Heart Hugs and over the years McIntyre has sent heart pillows to cardiac patients across the globe.

“Even after a regular surgery, whenever I laugh, I feel like I am going to pass out because of the pain,” she said giving the pillow a squeeze. “So, you hug the pillows."

As of last year, McIntyre had sent out more than 20,000 Heart Hug pillows to cardiac patients.

“They can squeeze it and it will make it easier for them to breathe,” she said. “I know it’s weird but when you put pressure on something that hurts, it doesn’t really hurt.”

On Monday, McIntyre and her mom had bags of heart shaped pillows with them in the lobby set to be delivered to the cardiac intensive care unit at Children’s Hospital.

The family visited with a few babies in the CICU while delivering the pillows. A baby who appeared to be about 1 year old cooed and kicked his legs in the air as McIntyre and her mom smiled and waved hello at him.

“She lights up when she gets to do this,” her mom said.

McIntyre continues to struggle with her health. Her heart stopped twice this year and she had to be revived. Mandu, her service dog is able to open up doors when McIntyre is in her wheelchair and fetch things for her.

Although he wasn’t trained to do so, the family says the dog can also detect when her heart stops beating and is able to alert others.

Her mom calls him Lorelei’s “life thread.” Despite her struggle with her health, Lorelei is enjoying her first visit to New Orleans during Mardi Gras.

The honorary princess and Mandu will be riding with the Knights of Babylon and have also been invited to the ball.

“I love it,” she exclaimed. “This is my dream come true.”

Correction: The McIntyre-Brewer family visited the Cardiac Intensive Care Unit (CICU) at Children’s Hospital in New Orleans not the NICU as the article previously mentioned.

Maria Clark writes about immigration, health care, the moon and other topics for NOLA.com | The Times-Picayune. Reach her at mclark@nola.com. Or follow her on Twitter at @MariaPClark1 .