What is the Bundesverband Herzkranker Kinder e.V ?
Disclaimer: This blog entry is a quick introduction to a german charity association, where I am an ambassador at. Because it’s located in Germany, the following blog entries about it will often just have the german version (for example if there was an certain event). But if I share information from this accosiation that could also be interessting to you if you are not located in Germany, then there will be an English version available. Then I will talk about general topics like information about heart disease, sports with heart disease or growing up with a heart disease. Thank you very much for your understanding.
In the moment, you hear that your child is diagnosed with a heart defect, your world might stop and stays still for a moment. It might feels like there is nothing you can hold on and your thoughts are running through your mind. “How could we help our child?”, “What kind of life quality will our kid have one day?” and “Where do we find support?” might be some of your questions, which suddently appear in your life.
At the beginning it’s all just about to safe your child’s life. You will meet many doctos, nurses, physiologic therapists and maybe also psychologists. You have to have confidence and trust in them because the life of your child is depending on their tasks. Even if every “medical case” is differnet and individual, most of the procedure and treatments are very common and ordinary to the team. But for you this is an exceptional situation and this all can be so confusing: all this new exercises and expectations toward you inbetween this jungle of medical terms. Moreover, in hospitals there are so many things that are happening at the same time, so you are constantly alert. The tinest change at the monitors might make you scared even if the nurses tell you that everything is normal and that you just need to get used to this new life.
Your wold stand still and your normal everydays life changed completely. Maybe you, dear parents, realtives, members, family and firends of your little “heart-kid” want to talk to someone who is or was in a similar situation like you. To exchange experiences and thoughts with people who understand your situation, because they know exactly how this feels like. Sometimes you also want to be sourrounded by someone who understands you but doesn’t just see you and your situation as a “medical case”.
I am not saying, that specialists don’t have empathy, because they do have a lot. And even more, I am impressed and grateful for their knowledge because also my life was laying in their hands once. However, I do believe that people sometimes need someone who is at their eye level, because they experienced the same.
Searching for understanding ouside of hospitals and doctor’s practices
Does this situations seam to be common to you? Or mabe you aren’t in those
situations anymore but you want to talk about heart disease topics, or to share
your story and courage with people whose kids just got diagnosed with heart
disease? Maybe it’s about hearing real life storys and experiences that might
face your kid one day, then jst trusting doctor’s statistics.
How do other heart kids and adults manage their life with HD (heart defect)? And what about the siblings who experience the whole story from a very different point of view?
Here I would like to introduce you to the german accosiation “Bundesverband
Herzkranker Kinder e.V” (=BVHK) which could be translated as “natinal accosiation for children with heart defects”. The BVHK was found in 1993 by parents whose kids were / are suffering from HD on their own. They work with and for families whose children have a (congenital) heart defect and also for teenager and (young) adults with HD. For adults with HD there is even a certain group which just plan activities for teenager and adults with heart defects. This group is called “JEMAH” which is the abbreviation for the german term “Jungendliche und Erwachsene mit angeborenen Herzfehlern” which means“Teenager and adults with congenital heart defects.”
The BVHK wants to support people with (C)HD to reach their personal best
quality of life with their heart defects. Therefore, the BVHK organizes
cerveral meeting during the year. For example: informational
meetings about the newest findings of cardiology knoweledge and treatment
worldwide or vacation and meeting for (C)HD kids to have fun, to gain
confidence and to learn to accept their disease with its blemishes. Moreover
they organize meetings for heart teenager and adults about topics which come
along with disabilities: what about sports, having a job or panning to have
children of their own? Here they also discuss topics like: How to grow up with
a disability? How will my future look and how old will I become? How do I
manage my mental health and which doctor is the best for me at a certain age?
Next, parents could join “parentcoachings”, because the heart defect of the kid might cause difficulties in their partnerships or in the relationship to the kid or to themselves. They can learn manage problems and feeling. Because it’s totally okay to admid their feelings and to let them out. It’s also so important to take some time for themselves.
Finally, the BVHK organizes events for siblings of (C)HD kids, because they might often feel like they need to grow up early, that the heart kid is always more important than the sibling itself or that they often need to hide their needs and wishes. So it’s all about to regain self confidence and to find comfort.
The BVHK organizes a lot of activities also for the whole family.
For me personally, my life is more than between hospital walls and since I was little, I joined their vacation trips because my family and I, we are members of the BVHK for very long already.
Here is their (german) website: https://www.bvhk.de/
Why am I talking so much about the BVHK?
I am more than just a member of the BVHK. I am also an ambassador for heart teens and young adults since 2018. That means, I will share my experiences and events I join and also general information that might be interesting especialyl to heart children heart teens, heart aduts, thei siblings or family and friends between 10 and 19 years old or their parents.
If there are general topics about living with heart diesease that you are interested in, then let me know in the comments down below and I can write a blog article epecially about these topics.