Eastern Panhandle of WV

Living with Congenital Heart Disease

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Meet Alisha Puller, who was born with a heart defect, but has remained positive throughout her entire life. She is a local resident of Charles Town, WV and currently works in the area.

After birth, Alisha’s parents were advised that their sweet baby girl had Congenital Heart Disease. A day later, this newborn baby was flown to Children’s Hospital to undergo surgery.

It didn’t stop there. A few months later, an open heart surgery was performed promising only a 17% chance of surviving.

Miraculously, Alisha survived and is able to tell her story today. Living with her condition, Alisha was unable to participate in physical activities. She certainly missed this as a child, but did the best she could to overcome it.

Alisha quotes, “I couldn’t run like the other children as it could’ve affected my heart causing serious complications. Alisha laughs stating, “I didn’t have to run the dreaded mile during the physical challenge at school which was at a major advantage”.

According to the Centers for Disease Control and Prevention (2014), each year, approximately 40,000 infants are born with Congenital Heart Disease.

Even though the cause of it is unknown, some researchers have found that women who are diabetic, obese, or smoke during pregnancy has a greater chance of having a baby born with a heart defect.

Despite the complications that took place during her childhood, Alisha has not allowed this disease to affect her future. She continues to see her heart doctor and takes the necessary steps to live a healthy lifestyle.

She currently holds a Bachelors of Arts Degree in General Studies and is pursing a Masters Degree in Public Administration. Her plans are to work at a non-profit organization in hopes of starting her own one day.

On April 24, 2015, Alisha took a stand in spreading awareness by attending the Congenital Heart Disease Walk in the Wheaton Park in MD. They were able to successfully raise over $85,000 which will go towards further research and education.

She is forever grateful for her family and her church for their love and support. Kudos to Alisha for not allowing a minor setback to affect her dreams and aspirations. She is truly an inspiration.

In Alisha’s words, “keep pushing and never give up”.

Interesting Facts to Know about Congenital Heart Disease

1. Diverse Range of Conditions

Congenital heart disease (CHD) encompasses a wide spectrum of structural abnormalities, with more than 30 recognized types. These conditions can vary in complexity, affecting different parts of the heart and leading to diverse symptoms and treatment approaches.

2. Lifelong Impact

While some CHD cases are mild and require minimal intervention, others can have a significant impact on an individual’s life. Many people with CHD require ongoing medical care, periodic monitoring, and interventions throughout their lifespan, highlighting the importance of long-term management.

3. Commonly Undiagnosed Until Birth

Most cases of CHD are not detected during pregnancy. Only around one-third of CHD cases are identified before birth through prenatal screenings. Early detection through prenatal care and specialized testing can help in planning for appropriate medical interventions after birth.

4. Multiple Causes and Risk Factors

The exact causes of CHD are often unknown. However, certain factors increase the risk, such as a family history of CHD, maternal health conditions (e.g., diabetes, obesity), exposure to certain medications or substances during pregnancy, or chromosomal abnormalities like Down syndrome.

5. CHD and Heart Murmurs

Heart murmurs, abnormal sounds heard during a heartbeat, are commonly associated with CHD. However, not all heart murmurs indicate CHD. Innocent heart murmurs, which are harmless, are also prevalent in infants and children without any underlying heart condition.

6. Advances in Detection and Treatment

Advances in medical technology and early detection have significantly improved outcomes for individuals with CHD. Advanced imaging techniques, such as echocardiography and fetal ultrasounds, enable more accurate diagnoses, while surgical techniques and interventions continue to evolve, providing better outcomes and quality of life.

7. Transition to Adult Care

With improved survival rates, more individuals with CHD are transitioning from pediatric to adult care. This transition involves comprehensive planning to ensure continued specialized care, ongoing monitoring, and support for the unique needs of adults living with CHD.

8. Emotional and Psychosocial Impact

Living with CHD can impact an individual’s emotional well-being and psychosocial development. Coping with medical interventions, lifestyle restrictions, and uncertainty can lead to emotional challenges. Support from healthcare providers, counseling services, and peer support groups can help address these aspects.

9. Promising Research and Innovations

Ongoing research and innovations aim to improve outcomes for individuals with CHD. Advancements include new surgical techniques, minimally invasive procedures, advancements in medical devices, and novel therapeutic approaches. These innovations offer hope for enhanced treatments and better long-term prognosis.

10. Advocacy and Support

Numerous advocacy organizations and support groups exist worldwide to raise awareness, provide resources, and offer support to individuals and families affected by CHD. These organizations play a crucial role in fostering connections, promoting research, and advocating for improved care and quality of life for those living with CHD.

Understanding these interesting facts about congenital heart disease can help raise awareness, promote early detection, and support individuals and families navigating the challenges associated with CHD.

If you or someone you know is facing the challenges of Congenital Heart Disease (CHD), you’re not alone.

There are numerous support networks, organizations, and resources available to provide assistance, information, and a sense of community. Here are some valuable resources to consider:

  1. Children’s Heart Foundation (CHF): The Children’s Heart Foundation is a leading organization dedicated to funding research to advance the diagnosis, treatment, and prevention of CHD. They also provide support for families affected by CHD and offer educational resources.

    Website: Children’s Heart Foundation

  2. Adult Congenital Heart Association (ACHA): ACHA is committed to improving the quality of life for adults with congenital heart defects. They offer resources, support groups, and educational materials to empower adults living with CHD.

    Website: ACHA

  3. Mended Little Hearts: Mended Little Hearts offers support and resources to families of children with congenital heart defects. They provide peer-to-peer support, hospital-based programs, and educational resources.

    Website: Mended Little Hearts

  4. The American Heart Association (AHA): AHA provides information about heart conditions, including CHD. They offer educational materials, lifestyle guidance, and resources for patients and their families.

    Website: American Heart Association

  5. Heart Defects in Children – MedlinePlus: MedlinePlus, a service of the U.S. National Library of Medicine, offers comprehensive information about heart defects in children, including diagnosis, treatment, and support resources.

    Website: MedlinePlus – Heart Defects in Children

  6. Local Support Groups: Many regions have local support groups for families and individuals affected by CHD. These groups provide opportunities to connect with others facing similar challenges, share experiences, and offer emotional support. You can often find these groups through online searches or by reaching out to national organizations like ACHA or CHF.
  7. Online Communities: Social media platforms, such as Facebook and Reddit, host online communities where individuals and families affected by CHD can connect, ask questions, and share their stories. These communities can be a valuable source of support and information.
  8. Counseling and Mental Health Services: Dealing with a chronic medical condition like CHD can be emotionally challenging. Consider seeking counseling or mental health support if you or your loved ones are struggling to cope with the emotional aspects of CHD.
  9. Patient Advocacy Groups: Some organizations focus on advocacy for CHD patients and families, working to improve policies, funding, and access to care. Get involved with these groups to contribute to positive changes in the CHD community.

Remember that seeking support is a sign of strength, and you don’t have to face the challenges of CHD alone.

Whether you’re looking for information, emotional support, or opportunities to get involved in advocacy, these resources can help you navigate the journey and connect with others who understand what you’re going through.

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