Ten years ago, the Butler family received the shocking news that their newborn baby only had half of a working heart. Their daughter, Lydia Butler, was born one week early and the doctors suspected nothing unusual. It was the family’s pediatrician that noticed something wasn’t right.
After arrival at Children’s Hospital and an echo, or ultrasound, the doctors found that baby Lydia, with only half a heart, would need three surgeries throughout her young life in order to survive. Lydia was officially diagnosed with Tricuspid Atresia, Ventricular septal defect, Atrial septal defect and Cor triatriatum, a multitude of heart defects culminating to mean that she had a single ventricle. Approximately one in every one hundred ten newborns is born with a congenital heart defect. Fortunately, 97% of babies born with a non-critical CHD are expected to survive their first year of life.
Lydia Butler, survivor, at a heart health event
Lydia’s last surgery was just before her fourth birthday and her mother, Lisa Butler, described that the family “lived in a bubble because illness affected Lydia differently than it would a normal baby or infant.” Although it took Lydia a little longer to develop mentally, the family “got through the first four years and she has pretty much thrived ever since.” Lydia, who is now a vibrant ten year old, enjoys being with her older sister, Natalie (12), and figure skating. Her health is well and now Lydia only goes for a checkup regarding her heart health annually. Through their family’s journey Lisa has been able to find “life-long friends and companionship” as well as a hope that everyone can make a difference turning these “negative experiences into positive ones.”
In the efforts to make a difference in the lives of families with situations similar to hers, Lisa founded the Greater Cincinnati chapter of the Mended Little Hearts Organization in 2010.
The current Mended Little Hearts leadership with Dr. Madsen (Lisa Butler- far right)
Through her work in the organization, Lisa’s goal is to make other parents aware of the newest research, resources and support groups that weren’t available to her ten years ago during Lydia’s journey. Regarding heart health awareness in general, Lisa has noticed that children are experiencing problems with high blood pressure, hypertension and obesity. “Athletes are found dropping on the field for no apparent reason when really it’s because they have a heart defect that nobody knew about.”
Children’s Hospital puts on a variety of events to promote general heart health awareness. The Heart Institute at the hospital supports the Recess in the Stadium event put on by the American Heart Association and the Cincinnati Bengals that teaches families healthy habits through various activities and nutritional workshops. Also, the largest free community Thanksgiving event for the homeless in Greater Cincinnati is the Fall Feast. This event provides children’s health screenings as well as nutrition and heart education. “It’s important to continue to push awareness, advocacy and research funding”, says Lisa, to determine the root cause of the problems in order to provide long-term support.
Lisa is also on the planning committee of a very important event at Cincinnati Children’s Hospital. November 14th marked the 4th Annual Heart Institute Family Education Day, an event aimed at providing parents of children with heart defects the newest research, not only conducted at Children’s Hospital, but nationwide. According to Lisa, the families benefit from the education day because “it can help with the closure process while helping to point families in the direction of the future and knowing what to expect.”
The event started in 2012 with approximately 40 attendees. This year, over 80 adults registered to attend. It also incorporated a concurrent children’s program in 2013 which has grown as well. Dr. Nicolas L. Madsen, Inpatient Direction of the Heart Institute at Children’s Hospital and coordinator of the event, is “so very grateful to the volunteers for their help in the growth of this event.” Dr. Madsen explains that the goal of the event is to “aim to not only provide education for as many parents as possible, but also to help even more families build their support network.”
Lisa and her husband, Steve, engaging in an activity at this year’s Education Day (left) and finished picture frame (right)
As a volunteer at the event for the past two years, I have personally experienced the inspiration and hope that these families lend each other. According to Dr. Madsen, when the families connect at this event “they are able to share their experiences and learn from each other’s journeys.”
Each year a different theme is chosen to attract new participants and intrigue those returning from a previous year. The theme this year centered on important elements of each parent’s journey: Acceptance, Action & Advocacy. Lisa Butler and Dr. Madsen come together, as this is the first year that the Heart Institute is formally partnering with Mended Little Hearts to put on this event. Dr. Madsen hopes “to reach out to more and more of our regional MLH chapters over the coming years to bring these parents together,” which is the ultimate goal and purpose of the Annual Heart Family Education Day at Children’s Hospital.