My continuing heart journey with Boston Children’s

My connection to Boston Children’s Hospital started on a bright and sunny June day in 1979. My parents, who were excitedly anticipating what they assumed would be the uncomplicated birth of their first child, got an unexpected surprise when I was born completely blue (like a Smurf) and had to be rushed to Boston Children’s.

I was diagnosed with transposition of the great arteries (TGA), and stabilized with a balloon procedure that allowed my blood to receive oxygen. The hope was that this procedure would allow me to grow big enough to have open-heart surgery. However, after three months, a routine visit to the pediatrician revealed that my balloon procedure was collapsing and I was rushed back to Boston Children’s. Dr. Aldo Castañeda, the chief of cardiac surgery at the time, performed a Senning procedure, which essentially re-routed the blood flow through my heart. That was my one and only major surgery.

Complex questions, honest answers

As part of a new generation of children living with congenital heart disease (CHD), my parents and I were often navigating this chronic, complex illness without the benefit of a long history and accompanying data. My doctors at Boston Children’s assured us that the best way to manage my condition was through routine follow-up care.

Throughout the years, there have been several conversations with my team where they answered a question with, “We don’t know,” or “We think this is the best clinical option given the data we have.” I appreciate that my cardiologists have always been honest, first with my parents, and then with me, to help make us the best decisions possible given the many unknowns about living with CHD.

Caring for the whole family

I’ve had three Boston Children’s cardiologists in my lifetime: Dr. Alexander Nadas, Dr. Jane Newburger, and Dr. Anne Marie Valente. Each one has taken the time to know, and care for, my entire family, realizing that this is not a disease that affects just me. For my parents, each milestone I reached —  especially high school and college graduations — was a cause for celebration. When I was born they had no idea if I’d be able to attain any of these goals or what my quality of life would be like. So these moments were a really big deal for them.

Transitioning to adult care

Since becoming an adult, my care has transitioned to the Boston Adult Congenital Heart Program (BACH), a group at Boston Children’s that specializes in caring for adults with CHD. While initially it was a little strange to be a grown woman sitting in the same waiting room I’ve known forever, I actually like the stability of getting my care in the same place and seeing the same faces year after year. And since the BACH team started offering an evening clinic a few years ago, I’m often in the waiting room with other adults, which is a little less weird.

As ‘normal’ as possible

These days, I realize that while growing up, I wanted to be as normal and as much “like the other kids” as possible. This was especially important to me when the “scars” from my disease were invisible on an everyday basis.

In hindsight, I appreciate that my cardiology team tried to give me as much leeway to be “normal” as possible. They said “yes” to many of the adventures I concocted, while my parents thought most of them dubious. In college, I discovered that I loved running, and eventually ramped up to doing 5Ks, 10Ks, and half marathons. I was also able to study abroad in Dublin in college and return there for graduate school, after my team helped identify a cardiologist there who was ready to see me if necessary.

I also worked for a number of years in a job that required extensive travel in Latin America and Africa. During that time, my cardiology team helped me navigate all the pre-trip vaccination and medical requirements, as well as create a plan in case anything unexpected happened.

Feeling grateful, giving back

When I lived in Dublin, the physician on campus declared that that he’d never seen anyone like me before. That made me realize just how fortunate I was to be born in Boston, and next door to Boston Children’s. 

That gratitude is what piqued my interest in joining the Family Advisory Council (FAC) when I saw on social media that they were recruiting new members. I wrote to see if they would consider including a patient, and to their team’s credit, they were open to the idea. I went through the FAC interview process and was invited to join the FAC in January 2018.

As a patient at Boston Children’s, I bring a unique perspective to the FAC. I can share my long history and knowledge of the institution, as well as my current experiences. At times, I can also remember what I might have been thinking as a child-patient or teenaged patient, and provide insight. Sometimes I say things like, “My parents wanted to keep me in a bubble!” and the other FAC members laugh because, as parents, they can relate and they didn’t realize their child may feel the same way.

Learn more about the BACH Program.