Cardiac surgery at Inova Children’s makes a difference for infant with trisomy 13

Although not every medical problem has a cure, in some cases, a treatment can have a profound impact on a child’s quality of life. That was the case for baby Elisha, who was born in September 2024 with trisomy 13.

Trisomy 13 is a rare genetic syndrome that typically causes severe intellectual disability and a range of serious physical problems, several of which are life-threatening. In Elisha’s case, he had kidney disease, respiratory issues that led him to stop breathing on his own, and a complex heart defect: an interrupted aortic arch with an aortopulmonary window and a ventricular septal defect. But thanks to the dedicated, multidisciplinary team of neonatal and pediatric specialists at Inova L.J. Murphy Children’s Hospital, Elisha’s heart problem was repaired — making it possible for him to go home from the hospital and spend time with his loving family.

A serious diagnosis

Elisha depended on a ventilator to breathe and had a severe heart defect that would require surgery to fix. Without that surgery, it was not possible for him to leave the hospital. The team at Inova Children’s, who had been caring for Elisha and his family since trisomy 13 was first detected before his birth, was concerned that performing open-heart surgery on Elisha would be too dangerous.

“During his first few days of life, Elisha needed a lot of support from the ventilator to make sure he was getting enough oxygen. Although his lung disease improved over the first week, he couldn’t separate from the breathing machine because his oxygen levels would decrease too much,” said Ilias Iliopoulos MD, FRCPCH, FRCP, FAAP, Medical Director, Pediatric Cardiac Critical Care at Inova L.J. Murphy Children’s Hospital.

Elisha’s parents, however, urged the team to move forward with the heart surgery he needed. Although they understood the seriousness of his condition, they asked the team to do everything they could to make it possible for Elisha to leave the hospital and spend time at home with his parents and siblings. In the face of this challenging diagnosis, Elisha’s family wanted the opportunity to make memories together at home.

A carefully considered choice

The surgical decision making in Elisha’s case was difficult. A social worker, the palliative care team, ethicists, genetics, nurses and Elisha’s medical teams worked together with the family to ensure that the family was fully informed about the seriousness of his condition and how challenging the surgery would be for him. The team also got a second opinion from another major cardiac center to ensure that offering surgery was ethically appropriate.

Ultimately, the team, led by congenital heart surgeon Chawki Elzein, MD, FACS, Chief of Pediatric Cardiothoracic Surgery; Bechara Akl, MD, Endowed Chair of Congenital Heart Surgery; and Co-Director of Inova Children’s Heart Center, decided to perform the surgery. On Oct. 21, 2024, Elisha underwent successful cardiac surgery to repair his heart defect, performed by Dr. Elzein.

After surgery, Elisha recovered well but was still not able to breathe on his own for very long. Once he had healed from his surgery, pediatric otolaryngologist Christopher Tsang, MD, performed a tracheostomy, which connected a breathing tube through his neck into his windpipe. This would enable him to stay on ventilator support at home. Elisha’s parents had lots of training on how to care for their son’s trach while at Inova Children’s, and one of Inova’s social workers arranged for home nursing care. And on January 9, 2025, Elisha’s family and his Inova care team celebrated together when he went home for the first time ever.

A good result

Today, Elisha is 10 months old. “Despite everything, he’s doing very well, considering his condition,” said Dr. Elzein. “His heart has been repaired, and his follow-up echocardiogram looks good. We do not anticipate him needing any other cardiac surgeries down the road.”

Although his long-term outlook is uncertain, being able to come home from the hospital and spend time with his loving family has made a huge impact. “We are forever grateful for the world-class, compassionate care Elisha received at Inova, to include the major heart surgery. It has given him another chance at life and allowed him to come home,” said Elisha’s mom. “Elisha coming home has improved our family’s quality of life, as it has allowed us to be a complete family unit. He is with the family by the dinner table at supper, in the living room, relaxing on the patio, and on our walks around the neighborhood or in the woods.”

“It makes a big difference to the quality of life of the child and also to the family as a whole to have more time together at home, despite the medical complexity,” Dr. Elzein added.

Pediatric heart care excellence

Learn more about how Inova Children’s Heart Center  offers advanced diagnostics, innovative treatments and compassionate care for every child.