Laura Freese, Sartell
The month of February is dedicated to raising awareness about heart disease and increasing knowledge and prevention. Heart Disease is the leading cause of death in the United States. Congenital Heart Disease is a specific type of heart disease. CHD is considered the most common birth defect and is the leading cause of birth-defect-related deaths worldwide. More than 40,000 babies (approximately 1 in 100 babies) born in the United States each year will have a congenital heart defect. Some defects are so slight the baby or child appears healthy for many years after birth, and some defects are so severe his/her life is in serious danger. Little is known about what causes CHDs and little is known on how to prevent them. There is hope that raising awareness of congenital heart disease will result in additional funding for support, research and services to provide quality care for our children and adults affected by CHDs. The advances in diagnosis and treatments have led to dramatic increases in survival for children with serious CHDs and most are able to lead active lives.
Feb. 7-14 is Congenital Heart Defect Awareness Week, an annual awareness effort to help educate the public about CHD. It’s a special week to recognize people born with heart defects, to remember loved ones who lost their battle to CHD and to honor the dedicated health professionals who work with us. I requested a proclamation from Mayor Joe Perske to recognize Feb.7-14, 2013 as Congenital Heart Defect Awareness Week and I’m proud to announce he has prepared and signed this proclamation for the city of Sartell. I hope the CHD proclamation and this letter may help raise some awareness about congenital heart defects.
My strong interest in CHDs is because my 5-year-old goddaughter, Hailee, is one of the many children affected by CHDs. As an infant, Hailee was diagnosed with numerous heart and lung defects, including Scimitar Syndrome, Partial Anomalous Pulmonary Venous Return, Pulmonary Hypertension, Dextrocardia, Right Pulmonary Hypoplasia and an Atrial Septal Defect. Scimitar Syndrome is a rare heart defect affecting only 1 in every 100,000 babies born. It’s characterized by an unusual arrangement of the pulmonary veins, which when seen on an X-ray, resemble the shape of a scimitar sword. Hailee’s heart and lung defects led to two open-heart surgeries at the Children’s Hospital in Minneapolis. Hailee’s first surgery was done in 2008 to repair PAPVR and close the ASD. This did not hold and therefore Hailee required another surgery in 2010 to redo repair. Hailee is a happy and healthy girl today and we pray she will not have to have any more surgeries. My family has learned a lot about CHDs by what we have witnessed ourselves with Hailee, as well as by learning from other families who are affected by it.
There are many ways to raise awareness and support of CHDs. Lasting Imprint is an excellent advocacy organization for anyone interested in CHDs. They are a non-profit corporation established by individuals who are committed to fighting CHD by funding research, helping to educate and raise awareness in our communities, along with providing hospital outreach programs, support meetings and family activities to those affected by CHD in Minnesota. Lasting Imprint holds many CHD awareness events, including two annual awareness walks, which this year will be held in Mankato on May 18 and in Alexandria on Sept. 7. These walks and the activities provided at them have been very enjoyable for my family and friends. For more information about Lasting Imprint, visit its website at www.lastingimprint.org.
Another way to raise awareness and support for CHD is to participate in the annual Heartbeat 5000 5K Walk/Run on June 22 in Minneapolis. This is a walk/race to support children’s heart health with proceeds helping to support the cardiac care program at the Children’s Hospitals and Clinics of Minnesota. This is a fun walk my family has participated in for the last four years. Visit www.heartbeat5000.com for more information.
I have heard lots during the last year about Camp Odayin in Cross Lake, Minn., which provides a fun residential camping experience for young people with heart disease. Camp Odayin offers a youth day camp in the summer and a family camp in the fall. You can help send a kid to camp by donating online on their website or by attending one of their fundraising events through the year. Visit www.campodayin.com for information.
For more information about CHDs, visit www.congenitalheartdefects.com, or visit the Congenital Heart Information Network website at www.tchin.org.