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In May of 2017, during a routine anatomy ultrasound, our daughter Olivia was diagnosed with CHD (congenital heart defects) and Heterotaxy Syndrome. After two weeks at our home hospital in Southern California, Olivia was flown to a children's hospital in Northern California to undergo her first open heart surgery at just 18 days old. We were in San Francisco for one month and went back 3 months later for her second open heart surgery. Sure it was hard being that far from our tribe but we still had everything we needed because of our tribe and the amazing organizations connected to the hospital. We finally went home in mid January of 2018. Olivia continued to thrive and we enjoyed every single moment with her.
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On Easter of 2019, she was admitted into the hospital because she was in heart failure. While inpatient, she had a stroke but thankfully she recovered and we went home after a 3 week stay. Fast forward to October 25, 2019 Olivia was admitted again because she was in heart failure. However, she did not get better and was transferred to UCLA 2 weeks later to undergo an evaluation for a heart transplant. She was listed on November 22. Olivia endured a lot while she waited for her gift. She coded on December 14 and ended up on ECMO (life support). Her third open heart surgery was on January 26, 2020 and that is when she received her special gift. This is the very short version of her story but we started the OG Life because we want to support families with their "heart" journey while they are inpatient and outpatient just like our family and friends support us.
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Congenital heart defect is one of the most common types of birth defects. CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).
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Babies with a critical CHD need surgery or other procedures in the first year of life. Even with improved treatments, many people with a CHD are not cured, even if their heart defect has been repaired. People with a CHD can develop other health problems over time, depending on their specific heart defect, the number of heart defects they have, and the severity of their heart defect.
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