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Her four-year-old daughter was having complicated life-saving heart surgery and, in the hospital waiting room, the minutes stretched on for what felt like hours. Making it even harder, Selbi, who asked that her last name not be used for security reasons, was undergoing the ordeal without family to comfort her. She was in Israel — hundreds of miles away from her home in the Kurdistan Region of Iraq.
But she was not forgotten.
“Every 5 minutes, another family member was with me on the phone, and I finally had to tell them not to call me anymore. I just had to have faith in my daughter and the doctors,” Selbi said to Direct Relief, in a translated video call interview about the surgery, which took place last February.
Her family’s path to Israel began the first week after her daughter, Inas, was born. During that time, Selbi and her husband, Poaz, noticed Inas had turned a bluish color. They took her to a local hospital. The physicians there diagnosed Inas with Down syndrome and said she had aortic valve stenosis, a type of congenital heart defect where the valve does not fully open, thereby reducing blood flow. Present in about half of babies with Down syndrome, it is a potentially fatal condition if left untreated and represents the leading cause of death for children with Down syndrome during the first two years of their lives.
Five months after the diagnosis, Inas had a stopgap procedure performed by a team of traveling Italian physicians. However, a more complicated surgery was still required to fix the inner structure of her heart and valves. The standard cost for such a procedure in Germany is about €70,000 and is even more expensive in the United States, the two countries where they were told to go by local doctors.
As internally displaced people living in a camp in Sharya, Iraq, having been targeted by ISIS as Yazidis, Selbi and her family lacked the funds to pay for the critical surgery and thought they were out of options.
“I was told it was a very complicated surgery and the possibility of success is very low, so I was very afraid of the surgery itself, if we could get it, and for the life of our daughter,” she said.
Both issues would be addressed by a program she had never heard about, based in a country about which she knew little, thanks to a chance encounter at a neighborhood market. It was there that Poaz met a local medical advisor named Murat, who told him about a program that might be able to help Inas.
“He said there is a group of Israelis that can operate and save my child’s heart, for free,” Selbi said. “I didn’t know a lot about Israel, I only knew that doctors there are very good,” she said.
Selbi was connected with Save A Child’s Heart, or SACH, an Israeli nonprofit started by an American in 1995 that brings children from all over the world to Israel and conducts cardiac surgeries, all free of charge. Over 6,000 children from 63 countries have been treated by SACH, including countries with no formal diplomatic relations with Israel, such as Iraq and Syria. The group also runs a free weekly clinic for Palestinian children. Since the program began over 20 years ago, 2,000 Palestinian children have been treated by SACH.
Outside of Israel, SACH doctors undertake missions abroad. They have examined over 9,500 children and trained more than 140 local physicians, nurses, and other healthcare providers in countries such as Ethiopia, Tanzania, China, and Romania. In Israel, SACH treats children in a new, seven-floor facility associated with Wolfson Medical Center in Holon. The nonprofit was able to fund the building, which is also open to local Israeli children who require care.
“SHe will be a perfect child”
Upon arriving at Ben Gurion airport in Israel, which followed an arduous journey via Turkey, mom and daughter were met by SACH staffers who, Selbi recalled, gave her and Inas “big hugs.” She said the greeting gave her relief, not only upon arriving in a new country, but also given the stress she carried due to both the surgery and the anticipated long duration, between 6 to 12 months, that SACH told her she and her daughter might be in Israel for Inas’s care.
“The trip was very exhausting, so being greeted by them gave me a lot of strength. They gave me such a warm welcome and I understood I am in a good place,” she said.
SACH patients and their families stay together in a house near Tel Aviv that can accommodate 60 people. Families are able to mutually support one another emotionally through what can be very difficult days both before and after the surgery, as outcomes for the complicated surgeries can remain unknown.
Selbi said that a meaningful part of her experience took place in the kitchen of the house.
“Cooking is a big issue at the house. It had a huge kitchen and everyone has their own unique way of cooking. Of course, each kid has their own needs too. When I was there, I felt I was in the right place, I felt energetic being with the other mothers. And I had the same feeling when I met the doctors,” she said.
During the interview with Direct Relief, Selbi was seated next to the physician who oversaw care for her daughter, Dr. Sagi Assa, Senior Pediatric Cardiologist & Head of the Interventional Pediatric Cardiology Unit at Wolfson Medical Center in Holon.
“It was a big surgery, an open heart surgery,” Assa said about the procedure performed by Dr. Lior Sasson. “The inner valve of the heart needed to be reconstructed because it didn’t fully develop. We had to create, from one huge valve, two valves inside the heart. Without the surgery, she would have died due to heart failure in the coming years.”
After many hours of waiting, Sasson came out and told Selbi the good news, even though her worries were not immediately alleviated.
“She was beside Inas’s bed in the ICU and was very worried, she was very stressed,” Assa said, since Inas was still intubated and sleeping.
“After checking an echocardiogram, I told her it’s looking really good, even perfect… I told her she has to be patient and that Inas will wake up and heal and be a perfect child. What made her really relaxed was when I told her to think about Inas’s wedding, not what’s going on in the next few hours. That’s the first time she was smiling,” he said.
Like Selbi and Inas, Assa’s journey to that ICU room was also unexpected, as he set out to become a sports medicine doctor. That changed when he was a resident after he began treating a Palestinian baby named Ayoub, who had a heart condition.
“I got attached to the family,” the former special forces soldier said, and thus embarked on a path of humanitarian aid work focused on pediatric cardiology. He said his work connects him, his colleagues, and other staffers and supporters with the Palestinians they treat.
“So many are like family now,” he said. “It’s a privilege to work on fixing children’s hearts.”
During the video call with Direct Relief, Inas popped her head into the frame periodically, at first with a curious look, and always with a smile. With ample energy, she moved between sitting in her mom’s lap, where she was hugging her, and exploring the room. At one point, she proudly held up her mom’s phone to the camera. Because of the surgery’s success, she and her mom were scheduled to fly back home to Kurdistan after only three months in Israel.
As she reflected on her experience, Selbi said she was filled with gratitude.
“They made me the happiest mother in the world,” she said.
Direct Relief provided Save a Child’s Heart with a $100,000 Covid-19 grant to help support their work in Ethiopia and has onboarded them as a partner to receive requested pharmaceuticals.