A 7-week-old infant in Oregon is fighting two rare medical conditions in a pediatric intensive care unit, nearly two months after being born.
Jack Arneson entered the world on Jan. 26 at Doernbecher Children’s Hospital, part of Oregon Health and Science University (OHSU) in Portland, Oregon, with a rare congenital heart defect known as Ebstein’s anomaly, his father, Zach Arneson of Ridgefield, Washington, told ABC News.
Soon after his birth, however, Jack’s medical team began noticing additional complications beyond his heart condition.
One of his physicians, Dr. Laura Miller-Smith, division chief of pediatric critical care and medical director of pediatric cardiac critical care at Doernbecher Children’s Hospital, said the team only discovered that Jack had another rare genetic condition, Sotos syndrome, after conducting genetic testing.
“The symptoms we were seeing that we now know are from his Sotos syndrome were severe difficulty with maintaining his sugar level,” Dr. Miller-Smith explained. “His glucose levels would drop very low, and he required significant replacement to keep them within a safe range.”
According to the National Library of Medicine, Ebstein’s anomaly is a heart defect in which the tricuspid valve is displaced, leading to issues such as blood flowing backward, right ventricular failure, and irregular heart rhythms.
“For Jack, his Ebstein’s anomaly is very severe, where early in life, there was difficulties with getting blood flow to go the appropriate direction, through his body, through his lungs, and out to his body,” Miller-Smith explained.
The National Library of Medicine also notes that children with Sotos syndrome often experience rapid physical growth, distinct facial features such as a broad forehead, and developmental delays.
Courtesy of the Arneson family
Miller-Smith said the rare combination of both conditions is what makes Jack’s case so unique. Research published in the International Journal of Epidemiology shows that Ebstein’s anomaly affects about one in 20,000 children, while Sotos syndrome occurs in roughly one in 15,000. She added that she is unaware of the odds of a child having both conditions.
“We know Sotos syndrome is associated with heart disease [but] we have not yet found a combination like this, with this severity of heart disease,” she said. “It’s not been reported in the [scientific] literature and some other experts we have spoken to have not seen this combination.”
Due to his conditions, Jack has already undergone one heart surgery, remains on a mechanical ventilator to assist with breathing, and requires continuous, around-the-clock care, particularly to maintain stable blood sugar levels.
“It’s so difficult when you first see your child hooked up to all those machines and everything. That’s like a shock to the system,” Arneson said.
Arneson said he and his wife, Danielle Arneson, who also have two older children, are taking things one day at a time while Jack remains in the hospital, staying hopeful that he will improve before undergoing another open-heart surgery.
He added that his family wants to raise awareness about Jack’s rare conditions.
“If there’s another kid out there somewhere that has something similar to this going on, hopefully. this can bring more attention to it,” he said.
Miller-Smith said Jack’s story also underscores the additional support children like him and their families require.
“These families need a lot of support, both from resources in the hospital and from their community,” she said.
Arneson also shared that his sister has created an online fundraiser to help support the family and cover Jack’s medical expenses.
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