Top of Ohio Mended Hearts offering sign-ups at Pineapple Palooza
My life and my family’s life began a journey down a new and unexpected path on Dec. 12, 2014, the day we found out some difficult news about my then 3-month-old son.
My husband Andy and I took our son, Everett, for an appointment with a cardiologist at Nationwide Children’s Hospital, to check on a heart murmur that was detected at an appointment with his pediatrician. While we were initially told it could just be an “innocent” or harmless murmur, we knew it was important to get this issue examined by an expert.
Our little guy Everett had an echocardiogram, which is an ultrasound of the heart, and when the doctor came to talk to us about the results, we knew from the concerned look on her face that it was something much more serious.
Everett was diagnosed with a genetic heart condition called hypertrophic cardiomyopathy (HCM), a disease where the heart muscle becomes thickened. The thickened heart muscle can make it harder for the heart to pump blood.
While the condition affects about 1 in 500 Americans, Everett’s doctor noted that it is rare to see such a severe presentation in a child, as it tends to cause more problems in late adolescence or early adulthood.
Everett was put on a beta blocker medication right away, and we were told about the signs of distress to look for in our new baby. We were scheduled for another follow-up appointment at the hospital one month later.
I remember driving home from the appointment feeling burdened and overwhelmed by so many fears and unknowns that lay ahead. We had amazing support from our family and friends, who were available to talk at all hours. At the same time though, this new reality felt very lonely.
As time progressed, we have found online resources and connected with other families of little ones with HCM across the miles on social media.
While those interactions have been wonderful, an in-person element and support would be so meaningful to our family. There are a lot of similarities shared for children undergoing medical care for a heart conditions – the many appointments, tests, hospitalizations, and even the needed surgical interventions that they often require.
The Top of Ohio Mended Hearts support group has joined together adult heart patients in the community for 29 years. Now the group is looking to expand its outreach to pediatric heart patients and their families.
The group wants to offer an opportunity for local heart families to connect over their shared experiences and to support each other, both through difficult ordeals and by celebrating successes and milestones for their young heart warriors. It’s also a chance for children and teens to get to know others who can relate with their experiences and the ups and downs of dealing with a heart condition.
This expanded group, nicknamed “Big Hearts, Little Hearts,” is offering sign-ups Friday, June 2, at the Top of Ohio Mended Heart’s booth at the Pineapple Palooza, which kicks off at 4 p.m. Rides and vendors are open until 9 p.m.
Mended Hearts member Bob Detrick will be operating his Grandpa’s Express train by the booth in the Kids Zone area of the festival, located along west Columbus Avenue. Donations will be accepted for the train ride to support a child attending heart camp next summer.
Families of pediatric heart patients are encouraged to stop by the booth to connect with current members and learn more details about “Big Hearts, Little Hearts” and upcoming activities.
Ohio Hi-Point Career Center student Allison Harlan also is working with the Top of Ohio Mended Hearts group to develop marketing pieces, along with a new Facebook page that is currently in development.
Chapter President Bruce Norris also can be reached at (937) 919-7213 for further questions.
The Top of Ohio Mended Heart meetings are open to the public. The next meeting is 6 p.m. Thursday, June 22, at the first floor conference room of the Mary Rutan Health Center, 1134 N. Main St., Bellefontaine.