Health Care

She was born without a lung and heart artery. Now she’s going home

It’s been six months since Cassidy and Chad Lexcen brought their then 4-month-old baby to Nicklaus Children’s Hospital for a first-of-its kind open-heart surgery using Google Cardboard and a smart phone. And while the past 182 days have been a tumultuous journey for the Minnesota family, with some days looking like Teegan might not make it and others showing the baby’s resilience, the Lexcens can now take their “miracle” baby home.

“This is what we live for,” Dr. Redmond P. Burke, director of cardiovascular surgery at Nicklaus, said Tuesday following a press conference announcing Teegan’s discharge from the hospital.

The smiling, 11.5-pound baby with the pink bow in her hair — who slept though most of the conference — wore a floral onesie that matched that of her 10-month-old twin sister, Riley, who was born healthy. The siblings were born in Minnesota on Aug. 20. Unlike her healthy sibling, Teegan came into the world with only one lung — instead of the normal two — and a critically deformed heart. Her left side was severely underdeveloped, and she had no left pulmonary artery, among other issues. Since she had no left lung, her heart was displaced into her left chest cavity.

Doctors in Minnesota told the Lexcens they could not operate and advised the parents to take Teegan home and prepare to lose her. But, every day that Teegan woke up, it was another reason to believe she could survive, her mom Cassidy said Tuesday, cradling her daughter.

“Teegan was showing that she was willing to fight so we were going to fight right next to her,” she said.

Determined to find a solution, the Lexcens, who have two other children, Harper, 6, and Asher, 3, contacted the Heart Program at Nicklaus Children’s for a second opinion. The family traveled to Miami hoping the hospital’s innovative procedure could save her.

Doctors used an iPhone tucked inside a cardboard device to plan Teegan’s complex surgery. The Google Cardboard turns a smartphone into a low-cost stereoscopic virtual reality viewer that doctors can use to convert a two-dimensional CT scan into a three-dimensional model of a tiny heart. The image is then uploaded and used in the operating room for the clearest view to make delicate repairs.

During the seven-hour surgery back in December, Burke rebuilt Teegan’s aorta with donated human heart tissue, connecting her aorta and pulmonary artery, and placed a shunt from the right ventricle to her only pulmonary artery.

As Teegan recovered in the ICU for months, a time that Burke said was often difficult, Cassidy and Riley took up residence in Miami while Chad and the other two children returned to Minnesota. Burke referred to the Lexcens as “warriors” and said their hope and tenacity were an inspiration to his team.

When asked what advice she might give to a family in a similar circumstance, Cassidy lowered her head and talked about hope: How she felt it come and go and how she watched other hopeful families in ICU end up heartbroken.

“When something happens to your child it’s always devastating, but the hope you have carries you through. And the love and support [from friends and family] cements it all together,” she said.

Two months ago Teegan had a second operation that is expected to be the last one until she’s about 3 years old. At that point, the plan is for her to return to Nicklaus for another procedure. For now, Teegan’s medical care will continue back in Minnesota with a handpicked team of physicians that doctors at Nicklaus helped put together.

Burke feels positive about the little girl’s prognosis, pointing out she left the hospital weighing almost 12 pounds, which is at the 2 percent range of normal for a 10-month-old baby: tiny, but alive.

It’s been a long, painstaking six months, Cassidy said, adding that they are overjoyed to be taking Teegan home.

“We still have her,” she said, noting there were many times that she feared a different ending. “She fought hard through this journey.”