A three-and-a-half-year-old boy from Jerusalem has been given a new heart in a complex transplant operation that ended nine months of hospital care and brought hope from one family’s tragedy to another.
Rafael was born with a complex congenital heart defect. At just three and a half months old he underwent his first heart surgery, followed by countless hospitalisations and treatments. Despite the efforts of his physicians, his heart continued to weaken.
Dr Amichay Rotstein, a senior paediatric cardiologist at Clalit Health Services‘ Schneider Children’s Medical Center, has cared for Rafael since he was one year old.
“We went through many hardships,” he recalls. “I had to tell the family that we were not moving in the right direction, that his heart was failing, and that he would most likely need a transplant.”
When Rafael’s heart collapsed during surgery, doctors initially placed him on ECMO support and later connected him to a Berlin Heart ventricular assist device.
“Suddenly, we saw a different child,” says Dr Rotstein. “A child who had barely been functioning began eating again, gaining weight, and smiling. There is something remarkable about children. They adapt to this reality. Rafael learned to live with the device and to protect the tubes as though they were part of him.”
Rafael’s mother says her son understood exactly what was keeping him alive.
“He knew the Berlin Heart was protecting him. Whenever the machine beeped, he would immediately check that the tubes weren’t bent. At night, he would remind me to connect it. He embraced the device with love because he knew it gave him strength.”
A race against time
But time was running out. After nine months of waiting, doctors decided Rafael would travel to the US where waiting times for heart transplantation are shorter. His father had already flown to New York to prepare for their arrival. Two physicians, a nurse, a technician responsible for the artificial heart, and Rafael’s mother were all ready to board the flight. There were fewer than two hours left before they were due to leave for the airport.
Then came the phone call.
“When I entered the room, there were far more doctors than usual,” Rafael’s mother recalls. “I thought they were talking about the flight. Then the doctor told me, ‘We’ve found a heart for Rafael.’ I almost fainted. I was in complete shock.”
A family’s generosity in their darkest hour
At those very same hours, a heart-breaking tragedy unfolded at Clalit’s Soroka Medical Center. Six-and-a-half-year-old Saba from Kafr Qasim, the youngest of four sisters, had accompanied her father and sister on a work trip and short holiday to Eilat.
“She was the spirit of our home,” says her father, Mahren Badir. “The most playful one. Daddy’s girl. Whenever she heard my truck coming home, she would run to greet me.”
The day before her death, Saba spent time with her family at the beach and promenade.
“She laughed and enjoyed herself. We had plans for the next day,” her father remembers. But on Friday morning everything changed. “I woke her up, but she didn’t respond. I tried again and again, but she wouldn’t wake up.”
Saba was first taken to Yoseftal Hospital and then airlifted to Soroka Medical Center. Physicians discovered that a congenital weakness in a vein in her brain had ruptured, causing catastrophic bleeding. Two days later she was declared dead.
Then came the hardest question.
“Yes, they asked us about organ donation,” says her father. “We immediately said yes, without hesitation.”
“My daughter is gone. What am I going to do with her heart? What am I going to do with her kidneys? The body is buried, but the organs can give life. At least let them save other children.”
Before saying goodbye to his daughter for the last time, he whispered to her: “Don’t forget us from above. We will meet again. And if I ever did anything wrong, forgive me.”
The transplant
At that moment, Rafael’s trip to the US was cancelled. At Soroka Medical Center, teams began the complex process of recovering Saba’s organs, while at Schneider Children’s Medical Center a race against time had begun.
Dr Gabriel Amir, Director of Neonatal Cardiac Surgery Service at Schneider, and his team disconnected Rafael from the Berlin Heart device that had kept him alive.
“Everything is timed down to the minute,” says Dr Amir. “The goal is to have the child ready at the exact moment the donor heart arrives. The shorter the waiting time, the better the chances for the new heart.”
During the night, Saba’s heart was transported from Soroka to Schneider, where surgeons performed a lengthy and complex operation.
“The heart started beating,” says Dr Rotstein. “It was the beginning of a new life. It was everything we had hoped for.”
For Dr Rotstein, the moment carried another meaning. Last year he lost his son, Tom Rotstein, an Israeli soldier who was killed in combat in Khan Younis, Gaza.
“There are mornings when all you want to do is stay under the blanket. Then you receive the news that there is a heart for a child waiting for a transplant, and you throw off the blanket and get up. This work sustains me. It gives me a reason to get up in the morning and continue living.”
Recovery
Today, weeks after the transplant, Rafael is smiling, growing stronger, and beginning to discover a new life.
“He’s not even sure where home is anymore,” his doctors say with a smile. “After nine months in the hospital, he is willing to go home for a little while and then come back, because to him, this is the safest place in the world.”
His first wish after the transplant was simple: to go to the zoo and feed a giraffe. He has already fulfilled that dream.
Looking at photographs of Rafael, Saba’s father says: “My daughter’s heart is alive. It is a gift from God. Thank you.”
Dr Rotstein adds: “It is not something we take for granted that we reached this moment. There were times when hope seemed to be fading. But organ donation gives life, literally. Whoever saves one life, saves an entire world.”
