TARA’S STORY
Tara McFadden is a 29 year old woman who wants to address the need for mental health care for individuals with Congenital Heart Defects. Tara was born with Hypoplastic Left Heart Syndrome and has been speaking with families in the CHD community since the age of 8. Over the years, Tara has talked to many parents of younger children and shared her life experiences with them. Meeting so many other individuals with a CHD made her feel part of a community.
Tara’s heart condition has impacted her physically. When she was younger she always wanted to play sports. However, she lacked the endurance required to play at the competitive level. Accepting that fact was challenging. After many attempts at various sports and much frustration, Tara finally made peace with it and found other interests such as playing pool, baking and non-competitive swimming.
In fifth grade, Tara discovered that she had a learning disability and soon understood the importance of self-advocacy. She expressed the modifications she needed to succeed and even made sure to get the proper accommodations throughout college and grad school. While in college Tara worked in the Office of Specialized Services helping others with disabilities. She would speak about the importance of being a self advocate and how to use your accommodations to help achieve academic success.
In fifth grade, Tara discovered that she had a learning disability and soon understood the importance of self-advocacy
Self advocacy has helped Tara not just academically, but also medically. She started experiencing some irregularities with her heart when she was in college. She was working with a team in NYC and did not agree with their care plan so she searched for a different team of doctors. After transferring hospitals, she felt confident in the new team. Tara emphasizes the importance of listening to your body, learning all you can about your CHD, and addressing issues when they arise.
Tara studied social work in college. Her social work classes allowed her to better understand human behavior and herself. She realized how all that she has gone through makes her see the world through a different lens than her classmates. Tara graduated with a masters in social work in 2017 and earned her LSW (license in social work) shortly thereafter. Today, Tara works with adults with developmental disabilities in a day habilitation program teaching them daily living skills and emotional regulation.
After graduating with her LSW Tara ran a CHD support group, for a brief period of time, where she discovered that individuals with a CHD have like mindsets. While running the group she found that they all share similar experiences and speak the same ‘language’ of medical terminology.
Tara is currently working on a new project, CHD Mindset, which is mental health therapy for people with Congenital Heart Defects. Look to follow her in the New Year @chdmindset on facebook and instagram.
Taylor’s Story
Taylor Hartzel Houlihan is a 24-year-old medical student, dancer, wife, daughter, and sister. She also happens to be a patient with Fontan circulation.
After her open-heart surgeries at Children’s Hospital of Philadelphia, she developed an interest in medicine and a passion for caring for others with congenital heart disease. Despite the challenges of growing up with CHD, Taylor refused to allow her condition to define her limits. She trained in classical ballet for 13 years, graduated as valedictorian from high school, and pursued the pre-medical track in college. Taylor is currently a third year medical student at Thomas Jefferson University and assists with Fontan research at CHOP. In addition to her studies, she maintains a rigorous exercise schedule reminiscent of her past ballet training. Recently, she started a social media account to share her medical journey, educate others about living as a Fontan, and offer hope to families with their own CHD stories.
If you are interested to find out more, you can follow her on Instagram or Facebook @FontanwithaFuture.
Meghan’s Story
Meg Roswick Didier is a 29 year-old woman with passion, a vision, and a voice – our community is better because she is sharing them! Recently, this impressive HLHS survivor spoke to an audience of researchers and clinicians at the Additional Ventures Single Ventricle Investigators Summit about her experiences. It was not the first time she has shared her story before an audience, as she has been a dedicated advocate for single ventricle patients for many years, sharing her story to give hope to patients and families and to push doctors and researchers to do more to increase the longevity and quality of life for single ventricle patients. If you want to be truly inspired, watch this video of Meg that she shared at the conference.
Meg finished her talk with this call to action: “There are going to be hard days where you’ll feel like you want to give up. But please don’t. Continue to strive. Continue to push the limits of medicine.” Our most sincere thanks to Meg for all she does to teach us that if we live with hope and optimism, the possibilities are endless.
