Despite having never met before, seven-year-old Mireya Moody and Lisa Schein hugged each other for a long time as tears plunged down their faces.
In the summer of 2024, that moment took place in a park near the Maleya residence in Shaker Heights, Ohio. Overwhelmed by grief due to the sudden death of her young daughter Maddie Shine in an ATV accident, Lisa and her family made the generous decision to donate Maddie's organs.
“I wanted to run over to Maileya and squeeze her around and never let her go. “It was tough to meet Maileya's mom, Bianca, talk to her, and hear her talk about Maileya's illness, but it helps me get to know Mady's life.”
Maddie's heart beating hard in Milejah's chest. Lisa was heard through a special stethoscope that recorded a steady, intense beat.
Lisa was beating Maddie's chest, and Lisa and Maiaya hugged her right after hearing her pounding Maddie's heart. (Courtesy: Bianca Robinson)
“It was a beautiful embrace,” recalls Bianca Robinson, mother of Maileya, now eight years old. “Until just before we met Maddy's family, Mureya didn't exactly understand the meaning of the new mind. She thought she would meet Maddy. But after we explained to her, Maddy was no longer here, so Mayyaya knew Lisa needed a hug.”
The most painful aspect of a heart transplant is the person that others must die in order to live. And Bianca was found by her daughter's heart as an ecclesiastical daughter, but her grief was overcome when another family realized that she had lost her child.
“It's a conflicting feeling, not just a sense of security, but also a sense of guilt,” says Bianca. “I was praying for months this day, but I knew what it meant to another family.”
Maileya was an energetic four-year-old when her life suddenly changed on January 25th, 2022. As Bianca worked as an HR manager for a medical transport company, Mireya's grandmother provided day care, and Mireya was mercilessly rental ghee.
Muileya a day before she gets sick. (Left) The doctor diagnosed Mireya with non-resistant (LVNC) cardiomyopathy of the left ventricle (LVNC) cardiomyopathy, a rare condition that could lead to heart failure. (Courtesy: Bianca Robinson)
“By the time I went to pick her up, she was getting worse,” explains Bianca. “It was strange because she was fine when I left that morning. She didn't even have the energy to walk into the car.”
After Mireya had a seizure of vomiting and unable to sleep that night, Bianca took her to the hospital's emergency department. It didn't take long for the doctor to determine the cause of her illness. Mireya had left ventricular incompatibility (LVNC) with ventricular myopathy, a rare and serious form of heart failure.
“We were shocked,” Bianca said of her and Maileya's father, Jay Moody. “At the time, we couldn't understand how that was possible. She had rarely ever been ill before.”
Immediately admitted to the hospital, Mireya began a round of oral medications to control symptoms of the disease. In her case, there were severe forms of tachycardia (rapid heartbeat) and other cardiac arrhythmias. However, Mireya's body was unable to withstand the medicine, and her condition worsened. She was sleeping all day and wasn't talking.
Three weeks later, the medical team suggested that Bianca seek special cardiovascular treatments. Without hesitation, Bianca chose to move Maileya to Cleveland Clinic Children.
Upon her arrival, Mireya was examined by MD Gerard Boyle, a pediatric cardiac function and transplant psychologist. When Bianca met Dr. Boyle, she immediately felt relieved by an honest assessment of Maya's condition and his sympathy.
Dr. Boyle and Mureya from Cleveland Clinic Children. (Courtesy: Bianca Robinson)
“Dr. Boyle connected with us immediately. He and his team were always transparent and knew what we needed. One of the first things he said was, 'You're not going to get through this, but that's not going to be easy,' he suggested we meet a psychotherapist.
According to Dr. Boyle, LVNC occurs due to malformations of the heart muscle distribution. “The left ventricle usually has to be a very smooth surface. But Mireya had an abnormal (spongeous, thick) bundle of muscles that made it difficult for the heart to contract and pump blood throughout the body.”
LVNC is treatable, but it cannot be cured. Like Mireya, the only option is a heart transplant.
When the care team goes through the process of putting Mireya on top United Network for Organ Sharing (UNOS) Dr. Boyle, a national waiting list, temporarily attached her to her Berlin heart. The Berlin heart functions as a bridge for patients waiting for a heart transplant by stabilizing the bridge and maintaining muscle strength.
After Maddie's sudden death, she was to save four lives through organ donation. (Commentary: Lisa Shine)
The donor's heart, especially the heart suitable for young children, is rare, so patients can wait up to a year or more to receive the heart.
“You can't do anything other than rely on your faith and medical professionals. I felt helpless and angry. I don't understand why this was happening or why it had to happen to her,” says Bianca.
On April 2, 2022, Bianca, who was relieved by her mother at Miyata's bedside, was sleeping at nearby Ronald McDonald House when she woke up to numerous messages from her mother and members of the Maileya care team at 6am. I found the right mind.
Mureya after receiving a life-saving heart transplant at Cleveland Clinic Children. (Courtesy: Bianca Robinson)
Bianca said, “My mother said, 'I think they've found a heart.' I arrived at the hospital as soon as possible.
Two days later, Mireya had an 8-hour heart transplant surgery. She remained nonverbal for days, but she had very few complications. She was recovering quickly and was transferred to Cleveland Clinic Children's Hospital for rehabilitation earlier than expected.
Mureja of Bianca (left) and her grandmother, Joyce (right). (Courtesy: Bianca Robinson)
From the first moment there, she “takes off like a rocket!” cried Bianca. “The day she moved to a rehabilitation hospital was the first day she smiled! It was so amazing. I think she could have said things were changing for the better.
Mireya regained strength and mobility during a rehabilitation session at Cleveland Clinic Children's Hospital for rehabilitation. (Courtesy: Bianca Robinson)
Soon, Malejah spoke again and walked. She gave a speech, occupational therapy sessions and expected eight-week stay to three weeks. “There's nothing to stop her from being a normal eight year old,” adds Bianca. “She knows she's a little different to the other kids, but that doesn't define her. She doesn't have any major illnesses or problems to make sure she doesn't become herself. She's the champion!”
“Pediatric heart transplants have made significant progress over the years, giving children like Maileya a second chance in life,” says pediatric and congenital heart surgeon Hani Nazim, Maryland. “But the key to this life-saving surgery is still among those who become organ donors. The generosity of donors and their families can turn into a hopeful beginning for someone else.”
Overall, Mireya continues to make positive progress. She was able to participate in kindergarten, first and second graders. (Courtesy: Bianca Robinson)
Dr. Boyle looks forward to visiting Maleya for regular health checkups and biopsies. “She's a fun kid. She makes us all laugh. She's singing when she enters the catheter measurement lab.”
Through Mireya's health journey, Bianca Let Ohio State Lifeline If they are happy, know that she is open to being contacted by the donor's family. It happened about a year later, when Bianca received a letter from Lisa.
When they shared stories about Mireya and Maddy, both moms were surprised by the similarities between the girls. Bianca says, “The way Lisa described Maddie, she and Mayaya sounded like they were practically the same kids.” They both loved singing and loved similar films.
Lisa gave Maileya a stuffed avocado toy when they first met. Along with a photo of her grandfather, Mireya sleeps on both items every night. She named it Maddie, the stuffed toy. (Courtesy: Bianca Robinson)
“We've even learned that girls share some of the same phrases,” says Lisa. “I also loved being able to talk about who Maddie is, about her infectious laughter and hilarious personality.
Mireya loves stuffed toys. Maileya's favorite where she sleeps every night is her cute plush toy, shaped like an avocado. It was a gift from the Shine family at their first meeting. Mireya named it Maddy.
Related Institutes: Cleveland Clinic Children, Heart, Vascular and Chest Research Institute (Miller Family)
