Olivia Stonehill

Olivia is an amazing 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, and 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. Its key features include heart anomalies, physical and cognitive delays, emotional and intellectual disabilities, and 182 other possibilities.



Olivia came home for the very first time when she was 36 days old, and was thereafter hospitalized 9 times due to oxygen desaturations and severe feeding issues. Because of this rapid deterioration, Olivia underwent her 2nd open-heart surgery, the Glenn, in early December 2009, wherein it was unexpectedly determined that she would require a 3rd reconstruction at approximately 2-3 years of age. Olivia also had a stent placed in her left pulmonary artery in July 2010.



Olivia underwent her 3rd reconstructive heart surgery, the Biventricular repair, in March 2012. She had an extremely rough recovery following this operation, but was 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. 



On July 31st, 2023, Olivia underwent her 4th open-heart surgery, where doctors successfully replaced her conduit, inserted a bovine valve, and repaired the LPA stent.  Olivia suffered several seizures immediately following the surgery, but recovered well overall and was sent home after only 5 days.


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), Juvenile Idiopathic Arthritis (JIA), 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 14-year old who loves life and is full of energy. She enjoys school, reading, writing, listening to music, and spending time with family and friends. While her journey has been difficult, it has been worth it, and Olivia seems happy nonetheless. We feel so extremely blessed to have her in our lives - our very own miracle 💗