Live Life to the Fullest While on the Peaks

By Anna-mary Geist, President of It’s My Heart New England, and mother to four-year-old Samuel, who participated in the 2014 CVS Health Downtown 5k All Kids Can Inspirational 200M Run/Walk

My son Samuel is a walking (and running!) miracle and has been a driving force in my participation as a volunteer and President of the Board of the New England Chapter of It’s My Heart, an organization that provides support to families affected by Congenital Heart Defects (a heart defect you are born with).

Samuel was born on September 1, 2010 with multiple congenital heart defects, namely a Hypoplastic Left Heart Syndrome (HLHS) variant and Double-Outlet Right Ventricle (DORV). While pregnant, my doctors said that when he was born, we would only have a day at most with our baby boy before his passing. Through what could only be described as a miracle, Samuel’s condition improved and we rescheduled his C-section for his due date to allow his respiratory system time to grow and give him a better chance at life. Our Samuel was born screaming and yelling, and of course, like the fighter he continues to be, he didn’t need a single thing from any of the doctors in the delivery room. After a day full of tests, it was determined that he had a further chance at life and would have his first of three open-heart surgeries two days later.

We spent the next five weeks of Sam’s life in the Cardiac Intensive Care Unit waiting and praying that we might actually take Sam home one day.  After almost two months, Samuel finally took his first breath of New England air. He was discharged from the hospital on October 21, 2010 and it was one of the scariest, but also wonderful, moments of our life.

In 2011, after coming across an It’s My Heart event in my hometown and following my son’s full recovery from his second open-heart surgery, I decided to start volunteering for the organization’s New England Chapter. After volunteering at a few events, I was given the opportunity to take on the role of President of the New England Chapter. I enjoyed being part of such an amazing group of people, so I said yes.  As President, I am constantly working with other volunteers towards our organizational goals of educating the public about Congenital Heart Defects (CHD), supporting families affected, and increasing funding for research and technological advances to help all families affected by CHD.

As a community resource, It’s My Heart provides families with financial and personal support and gives them the opportunity to participate in fun activities they might not otherwise be able to afford or organize. Additionally, we connect families together to give them hope and encouragement and build friendships that last a lifetime. Many of our families have amazing personal support systems, but I know first-hand that it is truly special to get support from someone who has also lived through your medical journey.

One of our favorite activities to participate in, and one my family has personally been involved with for the past two years, is the annual CVS Health Downtown 5K and the All Kids Can Inspirational 200M Run/Walk in Providence, Rhode Island. We decided to participate in this event because the race has a lot of family-friendly options, including one for children of all abilities. This event is extremely unique and is a fabulous option for our heart families, as many of their children are not fully physically-developed and may otherwise never have a chance to “win” the race. 

For the past two years, my son Samuel has participated in the All Kids Can event. When I see the excitement on his face as he shares the experience with other children of all abilities it gives me such an amazing feeling of joy and love. My daughter loves cheering on the runners as well and this makes me see this race as a wonderful teaching moment for the siblings and other children watching as they get to learn first-hand what it means to be truly compassionate. Emily understands that Samuel doesn’t have to be excluded from fun activities simply because of his abilities and that every child should have the chance to excel in areas they may never have believed they could try in the first place.

Samuel’s health is currently stable, yet continues to be closely monitored.  We know that at any moment his stable condition could change. We hope that educating Samuel on the best way to treat his body, including encouraging a healthy and active lifestyle, while at the same time raising funds to help advance medical research and treatment, will help us avoid him needing a heart transplant later in life and we will be able to spend many more years with our precious son.

In conclusion, I would like to share three small bits of advice for other families living with CHD:

  1. Get involved by educating yourself and everyone you know about CHD. It is the number one birth defect in the world and kills more children each year than all forms of childhood cancer combined, yet funding and research are among the lowest of all birth defects.

  2. Find a support group like It’s My Heart and get involved in community activities together like the CVS Health Downtown 5k. You can make life-long friends and help people who are facing the same issues as you.

  3. Take it one day at a time and love life as much as your CHD hero does. Your journey is a life-long rollercoaster. Take the dips one at a time and live life to the fullest while on the peaks.

You can learn more about It's My Heart New England and all of the programs, upcoming events, and activities at: