- Cardiomyopathy is a chronic illness of the heart muscle that causes the heart to decrease its ability to pump blood. In severe cases, it can lead to heart failure.
- There are five forms of cardiomyopathy: dilated (DCM), hypertrophic (HCM), restrictive (RCM), arrhythmogenic right ventricular (ARVC) cardiomyopathy, and left ventricular non-compaction cardiomyopathy (LVNC). Each of these forms is based on a different part of the heart muscle being affected.
- Cardiomyopathy can affect any child.
- Symptoms of cardiomyopathy may be different depending on the form of cardiomyopathy. For example, if a child has dilated cardiomyopathy, their symptoms may include shortness of breath, fatigue, and swelling in different areas of the body.
- Cardiomyopathy can be a genetically inherited disease, acquired from a viral infection, or caused by cancer chemotherapy.
- Cardiomyopathy is a chronic disease without any cure currently.
- Cardiomyopathy is the leading cause for children needing to receive heart transplants.
- When Cardiomyopathy is undiagnosed, it can lead to a higher risk of a child experiencing a sudden cardiac arrest.
- Many children with Cardiomyopathy experience activity restrictions and psychosocial issues.
- Treating pediatric cardiomyopathy is complicated due to the fact that it is a variable disease with many different causes and different symptoms. A treatment plan is determined mainly by the form of cardiomyopathy, the child’s age, and their heart status.
Harboring Hearts is partnering with the Children’s Cardiomyopathy Foundation (CCF) to promote Children’s Cardiomyopathy Awareness Month this September. The awareness month calls attention to the signs, symptoms, and risk factors for cardiomyopathy and sudden cardiac arrest.
Cardiomyopathy affects how the heart muscle pumps blood through the body, and it is a leading cause of sudden cardiac deaths and heart transplants in children.
Throughout the month, Harboring Hearts will be posting facts and information on Children’s Cardiomyopathy. Children’s Cardiomyopathy Awareness Month encourages parents, physicians, nurses, coaches, teachers, and community leaders to be aware of the signs and symptoms of cardiomyopathy to better identify at-risk children and direct them to the appropriate medical care. Increased attention in this area can help to prevent sudden death.
Follow our social media during this month to learn more about Children’s Cardiomyopathy.
For more information as well, visit www.childrenscardiomyopathy.org
As we begin to see families preparing for the next months ahead with back to school and fall we understand there may be concerns about what it will mean since we are still experiencing the COVID-19 Pandemic. Please know that our team at Harboring Hearts is thinking of you and your family during this stressful and unsure time.
In hopes of relieving some concerns you and your family may have, we are linking the CDC’s COVID-19 Portal and the specific section on Back to School. This portal has information on all things related to COVID-19. It has also specific information on what to expect with the rest of summer, back to school/ fall, travel, and even steps to keep safe while home.
We hope this information will be a helpful guide for you and your family to consider while making decisions on what your next steps will be to keep you and your family safe during this time.
You can find the link to the CDC’s COVID-19 Portal Here: https://www.cdc.gov/coronavirus/2019-nCoV/index.html
We recognize the impact COVID-19 has had on patients and their families who have lost their jobs due to the pandemic. To help support you and your family we have included in this post link to resources for those seeking employment after their job was impacted by COVID-19. This link has a wide arrange of resources on job searches as well as ways to protect yourself and take precautions while working.
We hope that this will help to support you and your families as you look to return to work safely as New York continues the phases of reopening.
You can access the link here: https://www1.nyc.gov/site/sbs/careers/covid19-jobseeker-outreach.page
The Team at Harboring Hearts is here with you as we navigate these uncertain times.
As COVID- 19 restrictions begin to be lifted and places will begin to reopen in New York, we understand that the patients and families we work with may have concerns with what this means and how they will be able to keep themselves safe. We are providing a link to New York State site will information on what the different phases of reopening mean. Also included is information specifically about guidelines and how to continue to protect yourself during this time.
The Harboring Hearts team is thinking about you and your families at this time and we hope this resource will provide information for anyone with concerns or questions with what reopening the state will mean.
The link to the New York State reopening resources can be found here: https://forward.ny.gov/
Be safe and be well.
Facing a pandemic as a patient who has had a transplant, or is waiting for a transplant, is an extremely difficult situation. As we face this journey together, please know that as transplant patients and families you are in the thoughts of the staff at Harboring Hearts and the rest of the transplant community. To help answer some of these questions and concerns we have linked information and resources from the American Society of Transplantation: https://www.
We hope you find these resources helpful as we continue, at Harboring Hearts, to provide financial and emotional support to families in need. We hope this link will serve as a guide as we all continue to be vigilant against COVID-19.
Stay safe, we are all in this together.
As we navigate these uncertain times, please know that you and your family are in our thoughts here at Harboring Hearts. There is an emotional and mental toll that can come along with having uncertainty and stress associated with this pandemic: health, housing, food, employment, and so many others. Some helpful exercises to help while at home are meditation and yoga. Exercises such as yoga help to increase endorphins which helps you to feel better and more energized. Taking safe and socially distant walks can help by getting some fresh air and Vitamin D to help lift your mood. New York State has teamed up with Headspace to provide meditation and other exercises to support your mental health, as well as other tips and resources. The link is here: https://www.headspace.com/ny. New York State has also created a helpful document full of resources and tips for those struggling with their mental health. The link can be found here: https://coronavirus.health.ny.gov/system/files/documents/2020/03/managing_stress_anxiety.pdf
Please if you need immediate support or help call 1- 800-273-TALK (8255) or text Got5 to 741741. If you know someone who is struggling please check in with them. Also, stay in touch with family and friends. Supporting each other during these times is so incredibly important for our mental health.
We hope these resources help. We are in this together.
Wellness and Entertainment Resources During Self Isolation
As we continue this self isolation journey together, know that you and your family are in our thoughts. During this time it can be difficult to find activities or resources that will contribute to the overall well-being of you and your family so our wonderful Junior Board Members have created a guide to help support you and your loved ones during this time.
Here is the link to the Google Form with these helpful resources: https://docs.google.com/spreadsheets/d/12MVTnw6KbRvQT7jZOo62GbnFi9zfHHYcSVxJP3sUYaM/edit#gid=210412472
On March 4th Harboring Hearts hosted a Heart Party at NewYork-Presbyterian Morgan Stanley Children’s Hospital. The theme was Dr. Suess and included arts and crafts projects based on popular Dr. Suess books including The Lorax, Horton Hears a Who, and the Cat in the Hat. There was also music and dancing, as well as an appearance by none other than the Cat in the Hat! Thank you to our volunteers from MuleSoft who engaged 40 patients and their caregivers with arts and crafts. Thank you to Clowns.com and to DJ Intake for providing such wonderful music. Also, a BIG thank you to the New York Presbyterian- Morgan Stanley Children’s Hospital and the staff who helped at the party!
On February 27th Harboring Hearts was grateful to support and host the Annual Heart Party at The Children’s Hospital at Montefiore (CHAM). Throughout the event, 82 people enjoyed the night with a lot of fun activities. The theme was Wild, Wild, West. There were activities that included face painting, arts and crafts, and a virtual reality game that looked inside the heart. There was also popcorn, festive decorations, a wonderful dance performance and a magic show thanks to Clowns.com. Thank you to Fields Good Chicken for providing a wonderful meal for our patients and families. Thank you to Rathkopf Photography for taking wonderful photos. Many thanks to our dedicated volunteers! Lastly, thank you so much to The Children’s Hospital at Montefiore for your partnership!
On February 28th, the Nike Store in SoHo welcomed 4 pediatric heart families to help us celebrate the end of Heart Month. It was a great evening! Led by the Nike Store team, families played basketball, took a tour of the store and played a lively game of bingo while learning about the store’s apparel. Harboring Hearts would like to give a BIG thanks to the Nike Store in SoHo for their partnership and especially to the entire staff for making the event possible! Thank you for another great experience for our pediatric heart families. Thank you to our families and our wonderful volunteers and photographer!