A few honest words to parents and relatives of children with congenital heart disease.
Disclaimer: It is possible that some topics might be triggering. Please take careof yourself and read this text if you feel emotionally stable about it.
Dear heart parents
I am writing this letter to show you that you are not alone.
I myself have a congenital heart defect and often have conversations with parents with affected children.
While I’m sitting here in front of my notebook, I can not know at which point in your life you are at, how many surgeries your kid already went through or how many may are ahead of you. I do not know what a heart defect it is in your case, where you live, how many children you have or what your pets are called.
But I can assume that if you read this text, you have a child with a heart defect. And while not all of the following may apply to you, I would be glad if you took the time to read the text. Because in the end, we all feel the same emotions in quite similar situations.
I would like to share a few thoughts today on what I would give parents if I could.
1.) Don’t handle your kid with gloves
Yes, you have to pay a little extra attention to heart children, take care a little bit more, look a little bit more ahead. But they are children. And they also want to play football and dance and jump in puddles with rubber boots, like other kids too.
Of course, there will always be a bit more fear inside of you, because you have been in a situation where you could not protect your child, in whom you were not in control, and sadly there is a greater risk of it happening again.
But until then, your little sweatheart wants to be a child and not a patient. And it wants to do everything, just like the others. Just belong to the group and be there and live.
Do not deny your child the chance to play and try out itself. Your child needs a place where it can be just as it wants, where it can discover its world in a protected and trusting environment. And this world is so much more colorful outside the hospital.
And the older the child gets, the more it will do things that you may not find right, such as coping with alcohol or roller coaster riding in the amusement park. Here too, it is often the case that doctors can only make recommendations based on their own experiences, and your child does not always stick to them. It has to learn and experience itself – especially in youth and as a young adult. It is therefore all the more important that topics that can present dangers to the heart sufferers can be discussed openly and addressed so that the adolescent can find a responsible way of dealing with himself, his body and his illness.
Personally, I think too many prohibitions and too much ‘packing in cotton wool’ can lead to the heart attacking patient either not becoming fully autonomous or rebelling “beyond the target.”
2.) Get yourself informed
It’s clear that the moment you get such a serious diagnosis for your child, you’ll be overwhelmed with it. For most of you, the topic of heart disease and medicine is brand new.
So get well informed. The more you know about your child’s illness, the better. But be careful where you inform yourself, because not all the sources you can find on the internet are always serious. I would recommend that you will get the information from associations for people those with congenital heart disease.
Talk to other stakeholders, but be wary of forums or groups because there the people can write stories about everything. You have to clarify for yourself how detailed you want to deal with the topic, because I can understand very well, if there are topics that you would rather not know anything.
Try to be treated in a hospital that specializes in the heart defect of your child. Not every doctor is competent and empathetic. Trust in your gut feeling.
Yes, of course it is important that you can trust the attending physician, because after all, your child’s life is in his or her hands. Communicate your fears openly and do not be afraid to ask anything.
Unfortunately, I often find that many pediatric cardiologists are very good, but often lack care for adults with CHD. Therefore, it is important to find the right doctor for you and not only to trust him blindly, but also rely on your knowledge, conscience and gut feeling.
3.) Fight, even if the story is still unwritten
I do not want to question anyone’s decision. And I am sure that every family and every parent has their legitimate reasons to act as he or she does. And there will be parents who can not handle such a serious diagnosis well.
Parents who deliver their child, or accompany it palliative or abort it.
I am not in the position to judge you and I would never allow this judgment. You will have your reasons to act or act that way, and I’m sure you did not make that decision easy.
But I do understand you.
And if you’ve decided to fight, then you’ve got everything!
You can not determine the outcome of this story. But as long as your child is not in a position to decide for themselves, then always decides in favor of the child. Yes, all these procedures are not easy for this little heart. But it is an attempt. And yes, I do not rule out that one day your child will accuse you of hurting him. But at least you can not blame yourself for not doing everything.
Do not be so easily beaten. Accept the regression and focus on the small rays of hope. And maybe it all pays off. Because I think the main thing is to create a life, which is valuable.
4.) Create a support-system
Nobody said that you are on your own. And even if it feels like that, you are not alone.
If you are already together as a couple, supporting each other, talking openly about your worries and hopes, and sharing the hospital services, it’s worth it. But do not forget each other.
Unfortunately, it is not always possible for both parents to support the heart child, but also each other. It is all the more important to create an environment that supports you – organizationally and emotionally. It is exhausting on so many levels to be in a hospital for such a long time.
There is so much support around you and you have every right to take it true.
You can also ask the nurses at your ward if you can get support from a social worker, or you’re looking for a therapist, talking to relatives, family, friends, other people with CHD kids, adult CHD paients, etc.
You are not alone and no one has said that you have to handle it all on your own.
5.) Take some time for youself
Take time for yourself and also for your partner.
Unfortunately, you might be so busy with survival and sacrificing yourself more or less for your child that one forgets that one and one as a couple is still important.
Be there for each other. Listen to each other and express your needs.
And take care of yourself too! What you do right there day after day is a gigantic achievement! Be damn proud of yourself, how you master it all. Yes, there are phases when everything is just too much, too exhausting, too chaotic. But you master it brilliantly, even if you may not see it right now.
You fight for your own flesh and blood and you fight for yourself. And it’s so important that you see for yourself how strong you really are.
You are not a machine and you can not expect that you will continue to fight at the pace for days and nights. Some days you just need time for yourself. A hot bath, a good book, a visit to the restaurant. Because you are at least as important. This situation is not only dependent on the doctors, nurses and caretakers and your child, but also on you. And it’s so important that you pay attention to yourself as well. Take care of yourself, do something good for yourself, and do not forget how valuable you are as a person in your own right.
6.) No special position in education
I am not able to judge parenting methods, but I know many of the heartchildren who are adults today, and we are relatively unanimous on one point:
Even though we have a disability and often had to adapt the circumstances to our needs, we are still normal children who do not need additional treatment in training, especially in terms of behavior.
Your child wants and must learn, just like everyone else. Yes, compared to healthy children, yours may be a bit different. But a disease or disability does not excuse any behavior. And I do not mean that a disease or disability can lead to certain behaviors or that the child is thereby restricted in some activities.
But I mean that a disease or a disability does not justify every behavior. Every kid is raised individually, which is absolutely right, after all, every one of us in this world is unique. But although a child has a heart defect and may not live as long as other people live, this child has the same rules of the game as other children.
Of course, the little heart always keeps a certain special position and needs special care. But just because it’s handicapped should not allow human-annoying-you to roll the dice once more in each round, and if it’s possible, it should be tied into the household as well as its siblings.
Exceptions confirm the rule and not every rule has to fit every child. But a child with a heart defect should not in my opinion be allowed or banned because it is handicapped. But to be educated so that his personal skills and abilities are promoted and demanded.
Behavioral rules and behaviors that should be learned in a social society should also be experienced by children with heart defects, because not in every situation of their life, the child comes into a situation in which his disability leads to a special position. Of course, this special status is given for example in physical education, but not necessarily in the doctor and how to behave at the table at lunch.
7.) Allow yourself to be vulnerable
Allow yourself to be honest. Stand by your feelings and communicate openly. The path you walk or the one that lies behind you weighs heavily on your shoulders.
Do not hide behind your mask. You do not have to prove anything to anyone here.
Talk about your feelings, your thoughts. With your partner or a therapist.
Do not eat the feelings into yourself, but find ways to handle the situation.
Talk to friends, go to sports, start writing…
And be honest and vulnerable to your child.
Your child feels when something is wrong. And yes, there are times when you have to be strong for your child, in which you have to protect it and for which you not only have to endure this situation, but also have to fight actively. But talk. Talk about feelings and hope, dreams and fears and death.
Be honest with each other and trust each other. We also heart children remember when the parents busy something and I think that if exactly in these situations, parents act as if everything is alright with oneself, that this confidence can break.
Because as much as you want to protect your child, your child wants to protect you from the same suffering. But in such situations, suffering is unavoidable. So be honest and sincere and show your vulnerability. Because together it is easier to bear.
8.) The journey has just started
Other people and even people who are close to you will not always understand your situation. And there may be times when you do not understand your child.
If someone had to go through so many procedures and surgeries, it would be naive to think that you are now healed, nor that these situations have any effect on your mental health.
In the first years, the goal is to save the life of your child. Later, the goal is to make your child’s life beautiful. Let it come to you. It comes in waves and some families meet a boat trip on the Baltic Sea and some families are surprised by a tsunami. Nobody knows what the future holds. But have faith in your child, that if it’s done this far, it’s a true fighter and in you, after all, you’ve achieved a similar amount. And everyone involved can be proud of that.
Help your child fill in the gaps and answer the questions it has about its story and the disease. The heart defect is something that has not only happened to the child but it is also part of its identity. So it is clear that your child asks why he or she has the heart defect, what this syringe or tablet is for.
You were just thrown into the cold water when you learned your child’s diagnosis and just as unprepared was your child born into his or her situation. And what might have been so “different” to you at first will always be the “normal” heart child and thus a part of his identity.
9.) Be proud of yourself
Your children will be proud of yourself too. The stage of puberty is tough and nobody ever said it would be easy. But you did your best at any sertain time. Without you, your child would not be at this point in his / her life. You may not be a machine, but you have fought with sweat and blood that your child will survive, that it will get the right therapies and treatments. You’ve worked with teachers and educators who did not understand that a child, what looks so healthy, can be so
sick. You dealt with health insurance companies.
You may lost some friends because they just could not understand that your life energy was currently focused on survival. You forgot yourself or your relazionship too often because there was no time for that. You have tried to treat the siblings equally and to be a good parent to them. And maybe it was not always easy for you financially. But now you are standing here. You are not a machine but a lion or a lioness.
Most can not imagine how much you fought. Be proud of yourself. You have done great things.
I would like to emphasize again that I do not want to judge about the parenting style or the life of any person. I am unable to give parents advice or self-help courses.
The points I have raised are personal, because of course I had the other conversation with my parents about how they are handeling my illness, I myself have some situations of my childhood and youth that are very present and I have often talked to other parents or grown ups with CHD about these issues.
Perhaps this letter is a basis for discussion or as a stimulus for reflection. However, it is hardly possible to find statistics on the quality of life of children and adolescents with heart defects and their parents outside the purely medical framework.
I want to thank everyone who took the time to read those words. And I would be so happy if I might even answered some of your questions.
Message me on Instagram, via email or here in the comments, how you like this kind of blog post.
I hope you are having a wonderful evening or a day – depending on when you read this.
– Your Sabrina