Born With Two Rare Conditions, Baby Jack Needed Heart Surgery — His Family Is Taking Every Day as It Comes

When Zach and Danielle Arneson welcomed their son, Jack, on January 26, 2026, they expected the usual worries that come with bringing a newborn into the world. Instead, their family soon found themselves facing a medical journey far more complicated than they had imagined.

Jack was born with a severe congenital heart defect called Ebstein’s anomaly. Shortly after his birth, doctors discovered that he also had Sotos syndrome, a rare genetic condition that can affect physical growth and development.

The combination created an especially difficult situation. Jack needed heart surgery, mechanical ventilation to help him breathe, and continuous medical monitoring to keep his blood sugar within a safe range.

By March 2026, the young baby remained in the pediatric intensive care unit at Doernbecher Children’s Hospital in Portland, Oregon. His family was hoping he would become stable enough to go home before facing another major heart operation.

A Serious Heart Condition From Birth

Jack was born with Ebstein’s anomaly, a rare congenital defect affecting the tricuspid valve, which controls blood flow between two chambers on the right side of the heart.

In this condition, the valve is positioned farther down than usual and may not function properly. Blood can flow backward, placing extra strain on the heart and interfering with the circulation needed to deliver oxygen throughout the body.

Jack’s condition was particularly severe. His doctors explained that, early in life, his heart struggled to move blood in the correct direction through his lungs and out to the rest of his body.

He required heart surgery during his early weeks of life. Even after that operation, he continued to need intensive support while his medical team monitored his heart and overall condition.

A Second Diagnosis Revealed Another Challenge

Although doctors knew Jack had a serious heart defect, they noticed additional problems after he was born. Genetic testing eventually revealed a second diagnosis: Sotos syndrome.

Sotos syndrome is a rare genetic condition often associated with accelerated physical growth, distinctive facial features, and developmental differences. In Jack’s case, one particularly urgent problem was difficulty maintaining a safe blood sugar level.

His glucose levels could fall dangerously low, requiring substantial medical intervention to keep them within a safe range. This added another layer of complexity to his care.

Jack’s doctors said they had not encountered another documented case combining Sotos syndrome with heart disease of this severity. While each condition is individually uncommon, the exact likelihood of having both together was unknown.

For his family, the second diagnosis meant learning to navigate yet another set of medical concerns while their baby was already fighting a serious heart condition.

Life in the Pediatric Intensive Care Unit

Jack’s care required around-the-clock attention. He was connected to a mechanical ventilator to help him breathe, while medical staff continuously monitored his heart and blood sugar.

For his father, seeing his newborn surrounded by medical equipment was a shock. The experience was far removed from the first days of parenthood the family had imagined.

Zach and Danielle were already parents to two older children. While they tried to remain hopeful for Jack, they also had to manage the emotional strain of spending so much time in the hospital and not knowing when their baby might be able to come home.

The family took things one day at a time, focusing on Jack’s immediate needs and the possibility of reaching the next stage of treatment.

Hoping for Home Before Another Heart Operation

In March 2026, Jack remained in the pediatric intensive care unit at Doernbecher Children’s Hospital. His family hoped he would become well enough to be discharged home before needing a second open-heart surgery.

That was a hope, not a confirmed outcome. At the time of the report, Jack still needed intensive medical care, and his future treatment depended on how his condition developed.

His father spoke publicly about the family’s experience partly to raise awareness. He hoped that sharing Jack’s story might help other families whose children face similarly complicated medical diagnoses.

The family also needed support with the practical and financial challenges of a prolonged hospital stay. Relatives helped organize fundraising efforts to assist with medical expenses and other costs associated with Jack’s care.

A Story Still Being Written

Jack’s journey shows how challenging it can be when two rare conditions occur together. His heart defect requires highly specialized treatment, while Sotos syndrome brings additional medical needs that must be managed alongside it.

There is no simple timeline for a child facing this combination of conditions. His care team must continue evaluating his heart function, breathing, blood sugar, and overall stability as they consider the next steps.

For Zach and Danielle, hope does not mean knowing exactly what will happen. It means staying beside their son, celebrating each improvement, and preparing for the next challenge as it comes.

Jack’s story was still unfolding when ABC News reported on him in March 2026. His family was waiting for the possibility of taking him home, while doctors continued working to give him the best care possible.

Source: ABC News, “7-week-old fighting 2 rare conditions in Oregon hospital,” March 20, 2026.