When our baby-to-be was diagnosed with a Congenital Heart Defect, my husband, Brian, and I were thrown into a very different world; a world of many uncertainties. Although, we knew our baby was in the best hands of medical professionals at Boston Children’s Hospital, we were very frightened and at times felt completely helpless. I desperately wanted to meet another CHD family, to sit and speak with someone who could truly relate to what I was feeling.
I came across the Mended Little Hearts national organization online, and phoned them to ask if there was a local chapter in Boston. To my disappointment, there wasn’t one in the State of Massachusetts.
After our son, Dean, was born and following his successful open heart surgery and recovery, we promised ourselves that we would reach out offering support to others that may be hearing the words “your child has a heart defect”.
The next time I rang the Mended Little Hearts’ national office, I asked how I could start up a chapter in Boston. It took a team of dedicated parents to get to where we are today. I feel very proud and privileged to say I am part of the Mended Little Hearts of Boston team!
When I was born, I was diagnosed with Tetrology of Fallot, the doctors knew right away that I was going to need open heart surgery, but back in the day surgery wasn’t sophisticated enough to have it be performed on a day old infant, and they wanted me to wait to gain weight and get stronger naturally to have a more successful outcome. I underwent two cathartizations at 2 and 4 months old to open up my pulmonary artery. Finally, at roughly 6 months old, I was admitted to Boston Children’s Hospital on July 1st and had my open-heart surgery performed on July 2nd. I was able to see the Boston Pop’s from my 8th Floor Cardiac NICU room and I have always considered those fireworks that year particularly celebratory for my successful repairs.
Growing up with a “heart condition” was really scary for me and still to this day hospitals trigger a lot of anxiety. Thankfully, I had support and understanding from my friends and family, but back in my day as a child there were no traditional support programs nor did I know any other kids with the same struggles I had. I didn’t necessarily get bullied or targeted for having a scar, but I was lucky enough to turn some of my self-doubt into a really funny and outgoing personality - none of which would have been possible without my mom or my medical support team! I remember getting quizzed about my heart condition each time I went to Children’s or UMASS for a follow up. I made sure that I focused on living the best life that I could and to do that I learned and learned a LOT! I made sure my intellect outshined whatever “condition” I was labeled with and in some way it helped me cope with it as well.
I learned of Mended Little Hearts Boston when I did my second Eversource Walk some years ago; my mom was working at BCH and told me about this organization. We decided to walk with them and raised money for their organization. I knew that in the future I would connect with them again!
Today, I live in this world
(mostly) complication-free. I work as a child and family therapist at two
wonderful organizations in Central Mass and the Metrowest Area. I’ve been
blessed to get a great education, marry a wonderful “Heart Husband”, my cats
are my absolute pride and joy of my life, and I live in an adorable home in
Central Mass. All of these things would sound fulfilling, but I knew that my
work wasn’t fully done until I reached back out to Mended Little Hearts Boston.
After meeting a board member, and a mom of a special Heart Warrior, it clicked
that this was the next chapter in my life, that this was the support I needed
al along! I didn’t actually
meet my first Heart Warrior with TOF until just this year, and it was only
after being re-introduced to Mended Little Hearts Boston! I hope to be able to
share all of my personal and professional knowledge with this team and with
other families to provide hope that life does go on and that being a Heart
Warrior just means that we get the honor of turning our worries into wisdom.