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10/17/2017 Latest post:
Olivia is a wonderful little girl, already equipped with so many stories to tell when she is older. After being life-flighted at 2 days old, Olivia was diagnosed with Interrupted Aortic Arch - Type C (most rare type), ASD, & VSD. She underwent her first reconstructive heart surgery at 7 days old (the surgery lasted over 10 hours). Luckily, she pulled through with flying colors, and was known on the PICU floor as "The Rockstar". Genetic testing confirmed that Olivia had a microdeletion in the 22nd chromosome, known as 22q11.2 Deletion Syndrome (VCFS/DiGeorge Syndrome). Unbeknownst to many, this is the second most prevalent genetic syndrome after Down Syndrome. It's key features include heart anomalies, physical and cognitive delays, emotional & intellectual disabilities, &182 other possibilities.
Olivia came home for the very first time when she was 36 days old, & was thereafter hospitalized 9 times due to oxygen desaturations and severe feeding issues. Because of this rapid deterioration, Olivia underwent her second open-heart surgery, the Glenn, in early December 2009, wherein it was unexpectedly determined that she would require a third reconstruction at approximately 2-3 years of age. Olivia also had a stent placed in her pulmonary artery in July 2010 due to increasing scar tissue near the surgical site.
Olivia underwent her third reconstructive heart surgery, the Biventricular repair, in March 2012. She had an extremely rough recovery following this operation, but has been a fighter throughout. Although the surgery was successful, doctors discovered that her second largest vein, the superior vena cava (SVC) was obstructed in late May 2012, wherein another stent was subsequently placed. She has begun to flourish since.
Olivia continues to receive weekly physical, speech, and occupational therapy services. In addition to the previously mentioned issues, Olivia has also been diagnosed over the last several years with hypocalcaemia, hypothyroidism, immunological deficiency, reactive airway disease, Lichen Sclerosus (autoimmune disease), Hashimoto's Disease (autoimmune disease), IBS, chronic constipation, Kyphosis (spinal curvature), and severe pronation of the feet. Fortunately, Olivia has a multidisciplinary team of specialists who oversee her care, and they have been a wonderful help to us thus far.
Aside from all of her medical issues and restrictions, Olivia is an active 8-year old who loves life and is full of energy. She enjoys school, painting, reading, listening to music, and most of all, spending time with family & friends. As the parent of an "enabled" child, I am excited for the future and for the opportunity to do "normal" things with Olivia. While her journey has been difficult, it has been worth it, and Olivia seems happy nonetheless. We feel blessed to have her in our lives and look forward to each memory with our little miracle.