Liam’s prekindergarten classmates can barely keep up with him, said his mom, Lexy. The 4-year-old loves gymnastics, swimming and has what Lexy calls a “photographic memory,” reciting parts from his favorite books during story time.
Liam’s energy and smarts delight his family because just two years earlier, he couldn’t breathe without supplemental oxygen as he faced a daunting diagnosis.
When Liam was two, he was diagnosed with a rare condition called the Abernethy malformation, which causes blood to flow around the liver rather than through it. It can lead to having abnormal shunts in the lungs, like Liam had, requiring oxygen therapy. When the condition progresses, it can cause deficits in brain function and high blood pressure in the lungs, which can precede heart failure and, ultimately, death.
Finding Treatment Across State Lines
Lexy said her family, who lives in St. Petersburg, Florida, had never heard of Ann & Robert H. Lurie Children’s Hospital of Chicago. But it is home to one of the few surgeons in the world, Dr. Riccardo Superina, who could perform the surgery Liam would need.
Fortunately, Lexy’s coworker has a relative who works at Lurie Children’s and helped connect the family with Dr. Saeed Mohammed, medical director of hepatology and liver transplantation at the hospital, who referred them to Dr. Superina.
“On the day I confirmed with my friend that I would like to talk with the physician at Lurie Children’s who could help my son, I found myself receiving a phone call from him!” Lexy said.
A month after the phone call, the family was traveling more than 1,000 miles from Florida to Chicago for surgery.
When Liam’s parents met with Dr. Superina for the first time, they were stunned by his approachability and demeanor. “He is simply an amazing doctor and person,” said Lexy. “He patiently listens to your concerns and answers questions in plain terms. He never makes you feel ‘small’ for asking a question. We think the world of him.”
Liam underwent two surgeries scheduled five days apart in which Dr. Superina corrected the circulation problem around Liam’s liver, channeling blood to flow through it.
Liam remained intubated for a week following surgery so his liver could heal. After five long days for his parents, Liam was removed from oxygen and Lexy and husband Ryan could finally hold their son. He was able to go home soon after, and about a month later, his pulmonologist, or lung doctor, canceled the order for medical oxygen. Liam no longer needed it.
“We were overjoyed,” Lexy said. “He exceeded our expectations.”
Now, Liam returns to Lurie Children’s just once a year for checkups, which are often a joyful time with Dr. Superina and staff. Liam spends most of his time at school and playing his favorite sports with friends.
“He couldn’t be doing any better,” said Lexy. “It’s just incredible.”