Anna’s Story About Alexander
Anna Marie Jaworski’s life changed when she went from being a full-time teacher of the deaf and hard-of-hearing to becoming a full-time mom in August 1991. Joseph Robert Jaworski was Anna’s firstborn son and with his birth Anna became a mom. It was the birth of Alexander, Anna’s second son, that changed Anna from mother to Tiger Mom! Alexander was born August 11, 1994 and unbeknownst to Anna and Frank, Alex was born with a series of congenital heart defects. After two months of protesting that something was wrong with Alex, the pediatrician finally agreed and admitted Alex to the hospital. Thus began a series of tests which resulted in an ambulance ride to a hospital three hours away. There more tests were conducted including a cardiac catheterization and finally the Jaworskis knew what was wrong with their second son. He had a laundry list of heart defects which the surgeon lumped together and called “hypoplastic left heart syndrome.” Initially the cardiologist and the surgeon told the Jaworskis that Alex was in congestive heart failure and that they should take Alex home to love him for what little time he had left. When they saw that wasn’t an option for Frank and Anna, they offered a sliver of hope to the parents in the guise of a series of open-heart surgeries that would convert Alex’s heart into a two-chamber heart. Because he was in congestive heart failure, he couldn’t wait for a heart transplant. His only option was a procedure called The Norwood Procedure and, luckily for Alex, his surgeon actually studied under Dr. William Norwood himself. In October 1994 Alex underwent a modified Norwood Procedure and then 7 months later he had a fenestrated Fontan procedure. Alex was healthy for 10 years when suddenly everyone noticed he would turn blue with any great physical exertion. In his Tae Kwon Do class is nose and fingertips would turn blue after doing more than one lap around the dojo. His karate instructor would grab Alex and hold him until he turned pink again when he would release him to join the runners again. It was clearly time to do something to help Alex. Alex had a catheterization and it was discovered that closing his fenestration would do nothing to pink him up since he actually had holes all along the Gore-Tex shunt his surgeon sewed into his heart when he was an infant. Alex’s heart had grown but the Gore-Tex, of course, had not and stretched out there were holes where all of the stitches had been sewn so many years ago. Something would have to be done, but Alex wasn’t really sick enough to risk another open-heart surgery. For over 6 years the Jaworskis took Alex to cardiology appointments every six months with the words “He’ll probably need another open-heart surgery in the next six months” ringing in their ears. Alex continued to grow and do well until into his teens when, in addition to being bluer than everyone wanted him to be, he started to develop an aortic aneurysm.
When Alex turned 17 his cardiologist felt it was imperative that he have another open-heart surgery. By this time Alex was in college working to earn an Associate’s Degree in Robotics from Texas State Technical College. While still keeping a careful eye on Alex, he was permitted to complete his degree and walk across the stage with his peers before having to undergo his third open-heart surgery. Luckily for Alex, Dr. John Calhoon was willing to operate on him again. No one knew Alex’s heart better. He also had the same anesthesiologist, Dr. Deborah Rasch. The doctor who had overseen Alex’s care in the ICU seventeen years prior, Dr. Thomas Mayes, was now in charge of all of pediatrics in the hospital where he would undergo his surgery. The surgery resulted in repairing the aortic aneurysm, taking down his old Fontan and creating a new, extra-cardiac Fontan (without a fenestration) and a Maze procedure (to try to prevent the need for a pacemaker in the future). It was a very complicated series of repairs and Alex’s body took a while to recover. Finally, after 26 days in the hospital Alex was able to leave the hospital – much pinker than he’d ever been except when on oxygen! Now, instead of having oxygen saturation levels in the low 80s, his oxygen saturation levels were in the 90s!
Currently Alex is an engineering student at NYU-Poly in Brooklyn, New York. Everyone is very pleased with how well he has done and he continues to inspire many in the congenital heart community whenever Anna speaks about her son or tells his story. In 2013 Joey (Alex’s older brother) and Anna went to Washington, D.C. to speak to legislators and their assistants about the importance of certain issues affecting the CHD community. Next year the Jaworskis intend to make Advocacy Day with the Adult Congenital Heart Association a family event where all four of them will go to Washington to advocate for the heart community.