SIDON, Lebanon: Opening his eyes, Ali wiggles his tiny legs as an artificial respiration device grinds away next to him.
At 900 grams, the 9-day-old Syrian boy is clinging on, refusing to give up even after his twin sister, Maysaa, died just four days after being born.
Ali’s very life is in the balance, and without intensive medical care, he would surely die. But that care is expensive, and despite his parents being fully registered refugees entitled to assistance with medical bills, the United Nations High Commissioner for Refugees said they were unable to help because Ali weighed less than a kilo and therefore was unlikely to make it past infancy.
All that changed Thursday evening when UNHCR, upon being contacted by The Daily Star, agreed to repeal their decision.
“Based on international standards, we don’t cover those born before 26 weeks who [weigh] less than a kilo,” said Dana Sleiman, UNHCR’s spokesperson.
“The child [Ali] was [born at] 28 weeks, but less than a kilo, which increases his chances of survival by 60-70 percent. This means we will cover the case,” Sleiman confirmed. “We will revoke the initial decision.”
Speaking to The Daily Star, Ali’s parents, Myriam Barhoum and Mohammad Qassoum, expressed their gratitude at the change of heart, which has put an end to weeks of uncertainty and wrangling over what to do with their son.
“We felt guilty when [Maysaa] died because we couldn’t do anything,” Qassoum said by phone, his voice emotional. “At one point I thought I lost my child, now he’s been returned to me,”
“We thank all of those who took part in this decision,” he added. “We thank the commission [UNHCR], hopefully they’ll follow through with this decision. We will do good in return. Our house is full of happiness now.”
Barhoum, who fled Syria’s Idlib province three years ago to escape fighting there, had to undergo a caesarian section Aug. 20, just seven months into her pregnancy, after she fell ill. Born two months premature, both Ali and Mayssa were immediately put on incubators at Sidon’s Al-Rai Hospital.
“She was admitted to the emergency room and since we are registered in the commission’s [UNHCR’s] records, they are supposed to pay 75 percent of the treatment [fees] and we pay the remaining 25 percent,” said Qassoum, who works in a shop.
So the parents were shocked when the hospital’s administration told them UNHCR had refused to cover Ali’s treatment.
“The rejection was based on the U.N.’s policy,” explained Ibrahim al-Rai, head of Al-Rai Hospital.
“We checked with the commission’s office in Tyre and their response was that the twins’ medical file was rejected,” added the father.
“They don’t cover cases like this because there’s no hope for them to live,” he explained. “In other words, they have to die.”
Instead, the family was told to apply to other charities and humanitarian organizations for help.
In the meantime, Al-Rai hospital agreed to keep taking care of Ali, but as the weeks dragged on, the dilemma intensified.
“The father hasn’t been able to provide any amount of money. Personally, I will continue to work on his [Ali’s] recovery, but I have limited capacities,” Rai said. “[Ali] remains attached to the artificial respiratory devices and there’s still a long recovery process.”
“It’s their right,” Qassoum conceded, but added: “My son’s situation is [currently] stable and he’s receiving treatment, should I kill him?”
UNHCR’s one-off decision to cover 75 percent of Ali’s hospitalization fees is a huge relief to both his parents and the hospital staff that have become so intimately involved in his case, yet questions over the refugee agency’s general policy remain.
“Humanitarianly, any patient that has a chance of living should be covered financially,” Rai said.
“We are facing a tough humanitarian case,” added Kamel Kazbar, head of the Union of Relief Organizations in Lebanon, adding that Ali’s case is an urgent one that should be dealt with humanitarianly.
“What should families do in this case?” he asked.
“Should they [premature or underweight babies] be killed? Or should they be left in incubators? And if they are, where should families get the money from?”
“It’s as if the U.N. is demanding mercy killings for those newborns.”