Madaya’s third kidney failure patient dies after months of ‘tremendous suffering’

Ali Ghussun weighed just 40kg when he died Monday morning of kidney failure.

Months of malnutrition and lack of proper medical care while under siege in his hometown of Madaya left the 31-year-old store owner frail and teetering in and out of consciousness, weighing the same as the average 10-year-old boy. 

His death, the town’s third from kidney failure in recent months, was “expected,” says Mohammad Darwish, a former dental student and one of Madaya’s last remaining medical professionals. Ghussun’s sole functional kidney was working “at just 25 percent” of its usual capacity in his final days, Darwish told Syria Direct on Monday.

At least 22 other people with acute kidney failure are in urgent need of dialysis, a life-saving procedure that Madaya’s last remaining medical workers simply cannot provide.

With regime and allied Hezbollah forces surrounding the Outer Damascus town for more than a year, precious few supplies can enter, and only with the regime’s authorization.

This means little food, and almost no medicine, for the former mountain resort’s 40,000 residents.

 Ali Ghussun on Monday morning, just before his death. Photo courtesy of Madaya.

None of the other kidney failure patients has left the town for treatment, though Darwish and others inside Madaya have petitioned for permission from the Syrian regime.

For Ali Ghussun, the slow deterioration of his kidneys meant his condition “wasn’t even diagnosed until one week after the last group of medical evacuees was allowed to leave Madaya” in August 2016, says Darwish.

“All we need is a kidney dialysis procedure, and his body will go back to normal,” Ghussun’s sister, Rula Ghussun, told Syria Direct’s Alaa Nassar just one day before her brother’s death. Below is the transcript of the interview with Rula Ghussun, which took place on Sunday.

Q: Can you discuss the reasons for Ali’s deterioration in recent weeks? What have the doctors told you about his condition?

Ali used to be an active, very sweet young man. His illness started almost a year ago, with severe migraines and a rise in blood pressure. Doctors tried giving him medication for his blood pressure, as well as sedatives.

However, after six months, this condition continued. We discovered that the amounts of creatine [an acid that supplies energy to the body’s cells] and urea [a compound that carries waste nitrogen through the urinary system] in his body were very high. We sent the analysis to specialized doctors [outside Madaya], and they diagnosed the condition as kidney failure.

Four months ago, doctors informed us that Ali was in need of urgent kidney dialysis—still, nobody allowed him to leave Madaya to undergo the procedure.  

Twenty days ago, Ali’s condition became extremely critical. His muscles are now weak and he is refusing all food, which is making him delirious. According to the Madaya Medical Committee, creatine is building up in his stomach and transforming into ammonia gas, then moving into his brain.

In addition, he is constantly vomiting. His weight has plummeted to just 40 kilograms [88 pounds, the weight of the average 10-year-old American boy]. At this point, we know that one of his kidneys has failed completely, and the other is only functioning at 25%.

Right now, Ali is not drinking any water. He refuses a glass of milk, or even a spoonful of honey.

Ali’s condition has changed our lives to an extent that we can’t endure this anymore. We feel that he will pass away at any second.

All we need is a kidney dialysis procedure, and his body will go back to normal.

Q: Have you informed Ali of his deterioration, and what the doctors have said about his condition? What has he said about his condition?

His delirium comes and goes, and sometimes he’ll wake up and ask me: “What did you say?”

Personally, I told him that he is suffering from bodily weakness. I can’t lie to him, but I tell him as much I’m able to without dampening his spirits. Sometimes I can’t speak to him at all, because of the agony in my heart.

Despite all this, he is still holding onto the hope that he’ll undergo kidney dialysis soon. We’ve tried every possible way to get him out of Madaya for treatment, but up until now nothing has worked. I’ve given everything I have within me, hoping for his treatment and recovery.

Ali used to talk to us, and fill the house with his lovely whispers. Now it’s rare to hear him speak at all, what with the tremendous suffering inside his body, and the nerve-racking bombings on our town. All of this has made him incredibly weak, and he can’t talk or hide quickly like the other people [when there are bombs]. He needs two people just to lift him and move him around.

Q: What are your hopes right now, considering the situation you and your brother are in? How can you help him?

I wish everyone who is sick could break free from the sieges all over Syria. Emotions cannot describe what it is like to watch a loved one die slowly, right in front you.   

I hope that our voices can be heard all over the world—the voice of the innocent people—without judging us based on our religion, or our lifestyles or political beliefs. 

Alaa Nassar

Alaa was forced to flee Damascus with her family because of the pressure from the Syrian regime in 2013. She was a student of Arabic Language & Literature at the University of Damascus. She came to Syria Direct because she hopes to find a new direction in her life and to show the world what is happening in her country.

Madeline Edwards

Madeline Edwards graduated from the College of Charleston with a bachelor’s degree in International Studies and Political Science in 2016. She was a Critical Language Scholarship (CLS) recipient in Arabic in 2013. Her studies have brought her to Jordan, Palestine and Turkey.