Logan Weaver, pictured here at the Fashion Show with Heart event on February 26, 2008, was born with only a sliver of the left heart. But his condition has given his parents a new outlook on life. Here's his story.
|PATIENT STORY: LOGAN WEAVER
Many parents, rushing from soccer game to music lessons, worry about balancing the many demands of their lives. But what would happen if you were also coping with the serious illness of one of your children?
Robert and Kimberley Weaver of Plainfield first faced this challenge six years ago when they learned their three-day-old son, Logan, had a life-threatening condition known as hypoplastic left heart syndrome.
"We were overwhelmed and spent a lot of time at the hospital. We worried we weren't giving enough attention to our daughters, Taylor, who was 4 at the time, and Madison, who was only 1," says Kimberley.
Hypoplastic left heart syndrome is a congenital condition that can include a variety of problems with the left side of the heart, such as malformation of the left ventricle, the valves, and/or the aorta. Logan's case was so severe he was born with only a sliver of the left heart.
Following his birth by c-section at Edward Hospital, newborn Logan scored perfectly on the APGAR tests (measurements of a new baby's health). But as he spent time in the nursery, the nurses and doctors noticed he was not eating as much as expected, and was sleeping more. When the pediatrician became concerned about clicking sounds that had developed in Logan's chest, he requested a consultation from pediatric cardiologist Mehmet Gulecyuz, M.D., of the Illinois Institute of Pediatric Cardiology and a member of the Edward Hospital medical staff.
Dr. Gulecyuz ordered the appropriate tests and, when Logan was three days old, made the diagnosis and moved Logan into the Edward Neonatal Intensive Care Unit. "We were shaken" says Kimberley, "but the know-how and quick action to get Logan what he needed saved him."
On day four of his life, arrangements were made to transfer Logan from Edward to a hospital where he would have the first of the three heart surgeries he would ultimately need to reroute his circulation.
Initially, Logan underwent a lot of home-based occupational and speech therapy and help with feeding issues, as well as weekly visits to Dr. Gulecyuz. "It saved us a lot of time being able to see a specialist at Edward and go for Logan's blood tests close to home," says Kimberley. "And today he only needs to see the doctor every six months. Still, Dr. Gulecyuz has become like a member of the family. His positive outlook really helped us get through this."
Most importantly Logan is now "full of life" his mother says, and can even play baseball and soccer, as long as he's careful. "But he knows enough to say "I need a break," when he's tired," adds Kimberley. "It's also important that he avoid hits to the chest or head because of potential internal injuries, and he's on large doses of Coumadin because he bruises easily."
And the Weavers have a new perspective on "balance."
"This whole journey has helped us appreciate life and our families more," says Kimberley. "In the past, we would get caught up in that high stress, on-the-run routine. Now we just want to slow down and enjoy our children."