Sawyer Link Alexander was born April 8, 2013 in Tulsa, Oklahoma. **Diagnosis: Severe Ebstein’s Anomaly, Wolff-Parkinson White Syndrome, 2 ASDs** Three weeks prior to Sawyer’s birth our family received the news that would change us forever, our baby’s heart was in trouble. Born with 4 congenital heart defects, Sawyer had an extremely grim prognosis & a very rough beginning. Our family was in and out of hospitals across three states, living in Ronald McDonald houses & searching for hope while we battled for Sawyer’s life.
Life at home included 77 doses of medication per week, physical therapy 3 times a week, speech therapy twice a week, Neurology once a month, cardiology twice a month & of course his regular checkups with his PCP. Due to a previous stroke, Sawyer developed epilepsy. He was 100% tube feed, as we struggled with his oral aversions & his gut issues stemming from cardiac distress. At 12 months old, our son was deemed failure to thrive & there was nothing we could do to ﬁx it without operating.
On May 20th, 2014 Sawyer underwent open heart surgery where Dr. Joseph Dearani executed 7 different procedures in an effort to remodel the right side of his heart, his one chance to avoid a heart transplant (or worse). Getting our son to Mayo Clinic in Rochester, MN saved his life & gave us all a fresh start. While we still participate in therapies, struggle with developmental delays & other residual issues from his aggressive beginnings— Sawyer is a brand new kid! Our road is far from over but we are happily enjoying his triumph, his survival.
Once the dust settled, we had time to reﬂect on our time spent battling CHD. Our diagnosis was the most devastating moment of our life, prior to the medical trauma that soon followed. It wrecked havoc on our baby, our emotions and also our bank account. Even with the best insurance, the families battling congenital heart defects are often saddled with thousands upon thousands of dollars in annual costs. This does NOT include missing work to be in the hospital, losing jobs due to absence or providing care to their child, traveling for medical care, lodging expenses out of state or co-pays to see specialists. Our goal is to provide ﬁnancial relief for local Oklahoma families, so they can focus on one thing: Fighting for life, simply because… We’ve been there.