A Heart for Sofia Hart

Hi friends, family, fellow community members, and beyond. My name is Julia, younger sister of Sofia Hart, who is currently in the Cardiac Intensive Care Unit (CICU) at Massachusetts General Hospital for Idiopathic Dilated Cardiomyopathy, an irreversible heart condition. I am writing this post to share Sofia’s story and how the past two weeks have impacted the trajectory of her life.

Some of you may wonder how this could happen to a seemingly healthy 29-year-old. While others may be asking.. wait why does this sound so familiar? In October 2015, Sofia's twin sister, Olivia, was diagnosed with the same exact condition. Shortly after her diagnosis, Olivia received a Left Ventricular Assist Device (LVAD, aka ‘Chad the LVAD’), followed by a heart transplant in December 2016. The onset of Sofia’s condition, seven years and one month later, suggests the potential role of genetic factors in heart failure among fraternal twins. As of yet, the cause for each of my sisters’ condition remains unknown. Although complex in many ways, we are incredibly grateful and fortunate to have an idea of what to expect and access to the best medical care in the world. A scientific enigma, and case that seemed nearly impossible, is our new reality.

On November 14th, Sofia went to the Martha’s Vineyard Emergency Department after presenting with shortness of breath and bloating in her abdomen. If you know Sofia, she would rather drink herbal remedies and eat grass than go to the hospital...so we knew something was wrong. Sofia’s ejection fraction (EF) was 22%; anything lower than 40% indicates possible heart failure. She was med-flighted to MGH on Tuesday, November 15th, where a cardiac MRI was performed to determine a proper diagnosis; she was admitted to the Cardiac ICU the following evening and has remained there since. Sofia’s condition was not as far along (relative to Olivia's), so the cardiac team decided to perform a medication trial before proceeding with an assistive device. This trial would attempt to transition Sofia from intravenous (IV) therapy to oral medications, allowing her to leave the ICU as an out-patient and return to a more “normal” quality of life. This past Sunday, Sofia’s medical team attempted to wean her from inotropic IV therapy, a class of drug that regulates the strength at which a heart beats and contracts. But unfortunately, her condition worsened and thereby the trial failed. This information left us with no option but to proceed with the LVAD, allowing Sofia to return to the Vineyard while she waits for a heart transplant. As I type this, on November 29th, she is undergoing open-heart surgery for LVAD implantation. Upon regaining consciousness, we will meet her LVAD sidekick, ‘Janis’. I’ll let Sofia describe that backstory..

For those who don’t know Sofia, she grew up on the beautiful island of Martha’s Vineyard and spent most of her childhood at Pond View Farm. As of recent, she has been running the barn she grew up in; it was the last place she was before leaving for the hospital on November 14th. After graduating from Keene State College in 2015, Sofia has since followed her eccentric dreams of living among nature, spanning from the mountains of New England to Truckee, California. Within the last few years, she settled back on the island, swiftly reintegrating into our extraordinary community. She spends her free time on the beach, experimenting in the kitchen, gardening, helping at the local homeless shelter, and, most importantly, with her sweet, one-of-a-kind pup, Maisie.

Despite the life-altering past two weeks and a newfound lifetime of uncertainty, Sofia has remained in great spirits. If you have been fortunate to know her, you can attest that Sofia is a firecracker. A force to be reckoned with. Her spunk and free spirit have filled hospital rooms. Her tenacity and take-no-sh*t attitude have guided her through the hardships of self-advocacy in the medical setting. She continues to exude her lust for life and hope for the future, even during these challenging times. Sofia has a long, unpredictable, and newly-unemployed road ahead of her; with your support, she can better adjust to this unfamiliar way of life and plan for the bright future ahead.

This GoFundMe aims to spread awareness to our local community and beyond. Although each donation means so much to us, your support is invaluable. We ask that you keep Sofia in your thoughts and prayers as she undergoes an LVAD implantation and awaits a new heart.

From my family to yours, please get your heart checked, even if you don’t have a significant history of heart disease. Also, if you are not registered as an organ donor, reconsider. It will save someone’s life.

To stay connected with Sofia’s story, receive current updates, and follow along while she navigates this new chapter— follow her on Instagram @sofiabeehart. This GoFundMe will also be updated as Sofia’s journey unfolds. Details on an upcoming community fundraiser will be posted soon.

Your support is seen, felt, and appreciated beyond measure. Thank you in advance for all you’ve done.

With much love, gratitude, and hope for the future…

-- The Harts, alongside Sofia’s chosen family & friends

#aheartforsofiahart

#aheartforoliviahart

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Sneak peek into Sof's journey thus far:

Where it all began: Sofia (left) and Olivia (right) pictured with pony Flash. Heading says something along the lines of "Complex surgery saves beloved pony." Full circle moment.

Sofia (left) and Olivia (right) looking cute as toddlers in matching overalls, of course.

Everyone meet the beautiful Maisie.

Sofia and long-time friend Caroline on a trail ride. Ponies not pictured.

Decades later and still shining in her happy place <3

Reunion of Sofia and Maise after a long 13 days apart. You can feel the love.

Sofia and cousin Michaela take their first walk outside since being admitted to MGH. Peep the pink hat.

As Sof says, "I'm feeling groovy." If that doesn't depict her mood daily, I don't know what will. Sending peace and love to anyone that has taken the time to read this far.

That's all for now-- updates on Sofia's post-operative condition to come!