My niece, Sarah Elizabeth, was born in 2000 with pulmonary atresia w/an intact ventricular septum, arrhythmia mirroring Ebstein’s anomaly and atrophied pulmonary artery. It’s a rare combination of defects even in the world of CHD. She was preliminarily diagnosed in our hometown of Mobile, Alabama, but the equipment wasn’t sophisticated enough, so we were both Ochsner’s in New Orleans. Two days later and after all-day testing, we were told there was nothing anyone could do: her lung capacity was less than 50% and her heart was already failing. All Ochsner’s could do was deliver her and let her pass peacefully in the corner of the delivery room. My sister refused to accept this and the weekend was spent researching her diagnoses and possible treatment centers. My sister went into labor three days later—the same morning Ard’s Children’s Hospital of Boston accepted Sarah as a patient.
A LOT happened next but Sarah had her first open-heart surgery at Harvard when she was 18 hours old. Unfortunately, that surgery failed and she had to start the process over. Three additional open-heart surgeries later she had successfully completed the Fontan.
Since then, Sarah has had a few transient ischemia attacks and required Coumadin for years. When she turned 16 she started having grand mal seizures. She just turned 20! I’ve watched her play soccer, volleyball and basketball through high school. She graduated high school last year and has started classes at the local community college and has a full-time job. She remains on several heart medications but she wears a 2-piece bathing suit without shame of her open-heart scars. She is beautiful, confident, smart, compassionate, and considerate, and loves deeply and fiercely.
Tears welled in her eyes when I told her about this WubbaNub. My 2-year old son has quite the collection and Sarah is his favorite human. Our collection wouldn’t be complete without this bear. Thank you for doing this!