‘They say we need to wait until his heart stops working before they will try to get him a new one,’ says Gloria.
 
Her son Danieli, who is now seven, was born in Georgia with a heart defect called hypoplastic right heart syndrome (HRHS). He underwent his first three open-heart surgeries before turning four. But Gloria and her husband Goga still feared for Danieli’s life because his lungs, heart, and stomach continued to fill with fluid. Doctors said there was nothing else they could do to help. So the family left for Switzerland in search of the healthcare he needed.
 
Cardiologists at the Kinderspital in Zürich scheduled surgery to stent Danieli’s lungs, improving his oxygen and blood flow. Then they treated his high blood pressure. The family was housed, friends were made, German was learned, and both Danieli and his younger sister were enrolled in public school. Psychologists and school specialists worked with Danieli to alleviate his slowed development and medical trauma.

But, still, nothing was certain. Like all people initially seeking asylum in Switzerland (except Ukrainians), Gloria – a student in international relations, and Goga – a college-educated veterinarian, were not permitted to work as they waited for the outcome of their family’s medical-based asylum claim – all they were allowed to do was clean streets for a tiny stipend. Research shows that the lack of employment opportunity for refugees is directly tied to rates of depression. To feel more useful, Gloria volunteered for the Red Cross visiting lonely aging people in their homes. Meanwhile her family waited three years, never knowing if or when they might be forced to leave. Then, their application was rejected just after Ukrainian refugees arrived by the thousands into Switzerland, immediately receiving residency permits, access to jobs, and precious healthcare. Swiss authorities claim that it would not endanger Danieli to return to Georgia, but his pediatrician, psychologist and public school administrators disagree and have written letters stating that it would be dangerous for him to return to Georgia and leave the stable environment they’ve helped create for him.
 
So, now the family  fights to keep Danieli close to the medical care he needs – or to find help outside of Switzerland. Gloria worries that Danieli may not survive if he is deported and they are running out of time.

Every day a gift

As highlighted by the American Heart Association, there have been great advances in research, surgical procedures and protocols for treating complex congenital heart defects like the one Danieli was born with. But access to that advanced care is limited to those born with privileges. Danieli was born in Georgia in 2014, seven years after Putin attacked the country leaving much of the population impoverished. His parents struggled to find sufficient care for Danieli’s condition.
 
Gloria tells me that every day of life with Danieli is a gift. I relate to what she is going through – in part. My own son was also born with half of his heart not functioning correctly. But he was born in Connecticut, in the US. We were able to access healthcare and he later received open-heart surgery at Columbia’s Pediatric Cardiac Center.
 
When I first met Danieli at the refugee centre where I volunteer, his eyes were reddish rimmed, he had a blue cast over his lips, and a pale-faced puffiness that was likely not noticeable to some. But these features stung my chest because they reminded me of my own son. Danieli looked tired, yet still smiled when I inflated balloons and wheeled play cars about. Gloria held her daughter, then a toddler, insisting on helping me clean after an art activity.
 
Now, three years later, Danieli’s condition remains fragile. His heart still works, even if only half-functional. Eventually he will need to receive a new heart. But while waiting for Switzerland’s response to his family’s asylum application, Danieli has received surgery and other life-saving care.
 
As a mother of a son who would not be alive without this kind of care, I’m outraged that chronically ill kids who are housed in safe Western countries may be deported while still in need of sustained medical treatment. Those who make these decisions, ignoring the formal recommendations of medical pediatric experts, violate the human rights of children.
 
As I work to locate backpacks and indoor shoes for the Ukrainian kids who have arrived in my Swiss village, I recognize that this work must not be at the expense of vulnerable children like Danieli who come from other countries.
 
Wealthy nations that claim ‘refugees are welcome’ must go beyond a fleeting interest in families who come from Syria, Afghanistan, and now Ukraine. Long-term plans for healthcare, especially for traumatized children with medical conditions, should be a requirement. This action must come from our hearts.

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