Olivia's Heart Surgery

My name is Stephanie, and this is Livi’s story.

Any family that has welcomed a new life knows the emotional rush of those first few weeks after the news that you’re expecting. The overwhelming joy, hope, and curiosity to begin a new chapter in your family's life…the whole world feels like background noise compared to the love you feel for this new life.

Thankfully, only a small percentage of expecting parents ever experience how quickly those feelings can be replaced by the inescapable fear that comes with being told your unborn child is facing a life-threatening condition. In my second trimester, Olivia was diagnosed with heterotaxy. This rare condition only occurs in one out of every 10,000 live births and without proper treatment can be life-threatening in infancy and childhood.

It is impossible to describe the pain and fear of knowing that before your baby gets the chance to draw her first breath, she will need to fight for her life.

We were determined to give Olivia a fighting chance. As our baby girl did her work, we did ours. Scott and I learned everything we could about her condition. Heterotaxy affects every child differently. In Livi’s case, as she developed it became clear that she would be born without a spleen, internally rotated bowels, and chronic heart conditions consisting of the left side of the heart being undeveloped, double right outlet ventricle, and pulmonary stenosis.

Despite a complicated gestation and a longer than usual post-birth hospital stay, Livi has shown us she will to live and experience all the joy life has to offer. While Livi can get winded quickly and becomes anoxic quickly when she’s active, she is thriving even after having her first heart surgery at only 8 months.

In October our family will face its greatest challenge so far. Olivia is scheduled for two inner heart surgeries with a specialist in Boston. These surgeries will buy her time, allowing her the opportunity to develop and grow stronger before the heart transplant she will inevitably face in the future.

At three years old, Olivia is preparing to face multiple surgeries in a strange new place. While this is a scary time for us, our only thought is to make her feel as safe as possible during this major event.

More than ever, Olivia will need the support of her parents. We will be traveling out of state for an unknown duration with only one parent receiving paid leave.

Therefore, we are reaching out to our community, requesting any help you can offer. All support will directly fund travel and medical expenses for this surgery. We will be providing updates to all donors via Go Fund Me and social media as Olivia’s journey continues.

Thank you for taking the time to learn about Livi’s story. And thank you to everyone that is can support our amazing little girl.