Baby With Rare CHARGE Syndrome and No Immune System Travels to Chicago for Surgery, Reunites with Mom

By Kareen Liez , Parent Herald Aug 11, 10:04 am

Photo: (Photo : ALINA MATVEYCHEVA/Pexels)

Baby Caius, who was born in Uganda with life-threatening conditions, was happily reunited with his mother Brenda Nakiyonga after he had been flown to Chicago for treatment to save his life.

Born just a few months ago, Caius faced severe health challenges from birth including no thymus gland leaving him without an immune system and CHARGE syndrome-a rare condition. CHARGE means Coloboma, Heart defects, Atresia of the choanae, Retardation of growth and development, Genital abnormalities and Ear anomalies. The prevalence of this disorder is 1 in 10,000 people.

In June, the local doctors in Uganda said it couldn’t be done and flew him to Lurie Children’s Hospital in Chicago together with his paternal grandparents; Diane and Steve Haskin.

"I'm just glad that I'm here with him and I get to hold him," Nakiyonga said, according to Chicago WGN9. "Simply unexplainable, it's been magical." For the first time in nearly eight weeks, she finally held her son as she was surrounded by her husband’s family and medical team at Lurie Children’s Hospital.

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A Journey of Hope and Gratitude

Caius began his journey when he came to Chicago through the efforts of his grandparents where he underwent an open heart surgery once he arrived. Even though Nakiyonga was devastated by being separated from her son, she expressed appreciation for assistance rendered by the U.S. embassy personnel, legislators, and health practitioners.

The coming together of nurse Sydni McStravick at Lurie Children's Hospitalï»¿ï»¿ï»¿ï»¿ and Dr. Ashley Ikwuagwu during the reunion brought tears into their eyes as they watched Caius’ response when he saw his mother.

Diane said that bringing Caius to this journey was the scariest thing they have ever done. But everyone is happy that he finally received medical care.

Recovery is still ongoing for Caius as he waits for surgery on September 5th and a thymus transplant that will come up later. Nakiyonga is also expected to meet her husband, who lives in Virginia. She is very grateful how helpful her in-laws and the medical team have been.

The reunion marks a poignant chapter in Caius’ medical journey and underscores the incredible efforts of those who made his treatment and reunion possible.