save a childs heart 521.
(photo credit: SHEILA SHALHEVET / SACH)
The two doctors move to the side of the Pediatric ICU at the Wolfson Hospital in Holon and speak in hushed tones.
“I looked at the smear and it is definitely sickle cell anemia,” Amir Lotan, a hematologist, tells his colleague, Tzion Houri.
“We’ll have to treat that first before we can do the surgery,” Dr. Houri, an expert in internal medicine, says with a sigh. “We’ll have to do a blood exchange and try to get it under control.”
Sickle cell anemia is a genetic disease which causes red blood cells to form an abnormal crescent shape. These blood cells deliver less oxygen to the body’s organs, which can complicate the heart surgery that the baby has come to Israel to undergo.
Houri looks toward the mother who hasn’t understood a word of the exchange in Hebrew.
Palmira Sebastian, 32, is from Angola and arrived with her nine-month-old son Juliom just a few days earlier for heart surgery sponsored by Save a Child’s Heart (SACH). Dressed in a colorful print dress, she sits quietly by her baby’s hospital bed. Wrapped in a blue and white hospital sheet like a cocoon, Juliom sleeps deeply.
“The doctors found the heart problem as soon as he was born,” she tells The Jerusalem Report. “I’m happy that he will get better here and I just want him to be healthy.”
In the next bed is four-month-old Farah Mershed from Gaza. Farah is awake and smiling, her dark brown eyes fringed by strikingly long lashes. At the end of her bed floats a blown-up surgical glove decorated with a drawing, and a stack of diapers. Her mother, Hulud, 28, dressed in a purple hijab, smiles.
She has been in the hospital for almost two months straight, never leaving her daughter’s side. Houri says that in addition to the heart defect, Farah had a hernia, which was also successfully operated on. In the next day or two, she will go home to Gaza.
“This is my first time in Israel and at first I was very nervous,” she says. “I don’t know Hebrew, but everyone here has been so nice, and I am so happy that they helped my daughter,” she says.
Farah is taking Viagra to counteract pulmonary hypertension and several other expensive medicines that SACH will continue to provide.
Houri says both of these babies would have died without the operations performed by SACH, a hospital-based charity that finances heart surgery for more than 200 children each year from the developing world. Funded by donations and the Israeli government, the children are brought to Israel, often with their parents, for a stay that usually averages between two and three months.
When they are not in the hospital, the children and their caretakers live in Legacy House, a building completed in April a few minutes away in Holon. They spend most of their time in a well-equipped playroom or in the garden outside. Each caretaker cooks for her own children, although the ingredients are supplied by the house.
How much does all of this cost each patient? Nothing.
“It’s like Club Med here – everything is included,” Houri says with a grin. “The surgery, the hospital stay, the plane tickets, the followup care – we provide it all.”
In the US, he says, each surgery would cost between $100,000 and $400,000. Here at Wolfson, it costs between $7,000 and $8,000.
The doctors’ salaries are paid by the hospital and all other costs are covered by donations from family foundations and businesses. For example, the children from Angola are financed by the LR Group, a large Israeli construction company founded by three former pilots, which has extensive interests in the African nation. The European Union (EU) finances much of the care for the Palestinian children, and the Ministry of Regional Cooperation chips in as well. The SACH annual budget is $2.5 to $3 million dollars. Since its founding in 1995, SACH has performed surgery on 2,800 children from all over the world.
“The only color skin we don’t like is blue,” says Houri, “because that means the child is not getting enough oxygen.”
SACH is also training dozens of doctors, hoping to expand the number of children it can help.
Naiz Majani, 34, from Tanzania, has been in Israel for two months. A pediatrician, she is here on a one-year fellowship to become a pediatric cardiologist – the first in her region of Mwanza, which has three million people.
One of her colleagues is studying to become Tanzania’s first heart surgeon.
Majani has left her three children, including four-year-old twins, behind, while she studies here.
“In Tanzania there are an estimated 500,000 children who need heart surgery,” she says. “I was expecting the highest quality teaching and hospital before I came here and that’s what I’m getting.”
SACH also sponsored a medical mission to Tanzania last summer, performing the first heart surgeries ever carried out in the country.
While the organization describes itself as non-political, hospitals are one of the few places in Israel where Israelis and Palestinians are officially in daily contact.
“I like to think of it as medical diplomacy,” says Simon Fisher, 40, the British-born director of SACH. “We are establishing ongoing and everyday relationships between Israeli and Palestinian parents through the medical profession. We also want to extend the medical cooperation between hospitals in Israel and the Palestinian Authority.”
Behind Fisher’s desk are 19 miniature flags of member countries of the NGO Committee of the UN. In 2011, SACH received a special “consultant” status and has participated in several UN discussions.
The organization is also hoping to expand at the Wolfson Medical Center and build a new state-of–the-art Pediatric ICU. They have launched a capital campaign to raise $25 million and already have $5 million in the bank.
The new ICU will enable them to double the number of children they treat every year When I was a young resident here, I saw Israeli children die because we didn’t have enough surgeons,” says Tunisian-born Houri, who immigrated to Israel as a child. “Today, every Israeli child who needs surgery gets it. But there are at least five million children around the world who are waiting for heart surgery.”
Just under one percent of children around the world are born with congenital heart disease, and half of them will need surgery in their first year of life. Others need surgery because of complications arising from untreated diseases, such as strep throat.
SACH was founded in 1995 by Maryland born Dr. Ami Cohen, a heart surgeon at Wolfson.
Cohen died in an accident while climbing Mount Kilimanjaro in 2001. Photos of the pudgy, balding doctor are scattered around the hospital.
The Legacy Home, where the children and parents live, is a new addition. Until last month, they lived in a rented apartment, and space was tight. Here, the smell of fresh paint is still in the air. The small bedrooms have two single beds and wooden closets. Multicolored tiles decorate the shared bathroom and shower.
“We are responsible for the children from the moment they arrive at the airport – even if it’s 3 a.m. someone goes to meet them,” says housemother Laura Kafif, 50, originally from Northern Ireland. “We try to make life as normal as possible for them.”
Kafif helps impose a daily schedule, with the help of volunteers. For children who do not need to go to the hospital for tests or checkups, there are volunteer helpers and quiet activities.
Children either before or after surgery can’t play ball, as a ball to the chest could be dangerous.
“We don’t even have slides in the garden outside,” says Kafif.
Volunteers come to teach the children how to use computers or to celebrate the holidays.
Some volunteers live in the house for several weeks at a time. Others, like Molly Piccione, 23, originally from Babylon, New York, come twice a week. Piccione gently holds Harith, a ten-month-old from Zanzibar, so his aunt can eat her lunch.
“I love being here,” says Piccione. “For the first few weeks I was a stranger and I didn’t know how to connect with the children or their families but now it’s a ton of fun. Today I played Bingo with the children. Sometimes we put on music and dance.”
Piccione is on a Jewish Agency sponsored program called Masa. She hopes to attend medical school next year.
A few days later, the baby with sickle cell anemia is out of the ICU and staying at the house while he receives treatment in advance of surgery.
“She’s familiar with the disease because her brother has it as well,” says Houri. “It’s hard because she knew about the heart problem but now she has another disease to deal with as well.”
Houri says there is no cure for sickle cell anemia but there is treatment which Juliom will receive. His surgery will be performed in a few weeks.
As for Farah, she has gone home to Gaza and will return in a month for a follow-up visit.
“She’s looks like magic,” Houri says happily.“She’s gained so much weight. She’s smiling and the mother’s smiling. It’s all good.”