Having a child with CF

You recently became a proud parent of a child? Wow, congratulations! The feeling of being a mother or a father must be incredible. Have you also learned that your child has CF? Maybe that was a shock for you. Maybe you already know a lot about it, maybe not. CF doesn't sound nice at first. But there are definitely beautiful sides. I would like to give tips from my point of view, but also from the point of view of my parents. 

What does that mean for us?

You for sure have already informed yourself a little what CF is exactly. If not, you can find a lot of useful information about it on the www.cfch.ch page. In addition, your hospital will certainly give you more detailed information and refer you to the nearest CF clinic. For the first time, your child is the same child, whether it has CF or not. CF has many different courses. This cannot really be predicted in advance. In the internet you can find a lot of information, good as well as bad. Do not believe everything what you read there! CF certainly has its pitfalls, but that does not mean that our life must always be bad. 

What to expect?

This question is very difficult to answer. Certainly a CF child needs more attention and care, especially at a young age. There are certain things to consider (e.g. hygiene regulations, places with many germs, therapy, etc.). Below I would like to tell you a little bit more about them. You will also find a report of my parents below. They tell a little about the challenge they had with me. You are welcome to contact me if you would like to contact someone who has CF. My parents are also contact persons for parents with CF children and will be happy to give you more information. You are not alone! 

What does that mean for us?

You for sure have already informed yourself a little what CF is exactly. If not, you can find a lot of useful information about it on the www.cfch.ch page. In addition, your hospital will certainly give you more detailed information and refer you to the nearest CF clinic. For the first time, your child is the same child, whether it has CF or not. CF has many different courses. This cannot really be predicted in advance. In the internet you can find a lot of information, good as well as bad. Do not believe everything what you read there! CF certainly has its pitfalls, but that does not mean that our life must always be bad. 

What to expect?

This question is very difficult to answer. Certainly a CF child needs more attention and care, especially at a young age. There are certain things to consider (e.g. hygiene regulations, places with many germs, therapy, etc.). Below I would like to tell you a little bit more about them. You will also find a report of my parents below. They tell a little about the challenge they had with me. You are welcome to contact me if you would like to contact someone who has CF. My parents are also contact persons for parents with CF children and will be happy to give you more information. You are not alone! 

What's there to keep in mind?

First, be proud of your child, whether it has CF or not. For many of us CF sufferers, the disease has learned a lot of positive things in life. Of course there are times when infections burden us and we are in hospital. Nevertheless, life is absolutely worth living. Enclosed I would like to list a few points which are important from my point of view:

  • Don't make your kid feel like he's different. We don't like that. We don't want to be seen as a person with CF who can't do things or needs special treatment. We want to be normal, just like you.
  • Teach your child the right way to deal with the disease. Be open in your communication and tell in a playful way why we have to pay special attention to certain things and why we do our therapy.
  • Water that stands around is poison to us. We should drink as no water that has been standing around for a few days (1-2). In addition, indoor swimming pools, earth, sandboxes, etc. are a problem for us. But that doesn't mean that we should keep our hands completely off it. Playing is also part of being a child.
  • No matter how often you tell us that we should do our therapy more regularly, I don't think that will change a lot. The therapy should be a little fun, maybe you know a funny game that can be associated with inhalation. Or why don't you inhale at the same time? ( Of course only with NaCL)
  • Nutrition is important for us. A lot of fat is essential, but not from sugar. So don't stuff us with sweets, but think about a healthy alternative. 
  • Due to the high salt loss at warm temperatures you should always have salty snacks and plenty of water with you. 

First, be proud of your child, whether it has CF or not. For many of us CF sufferers, the disease has learned a lot of positive things in life. Of course there are times when infections burden us and we are in hospital. Nevertheless, life is absolutely worth living. Enclosed I would like to list a few points which are important from my point of view:

  • Don't make your kid feel like he's different. We don't like that. We don't want to be seen as a person with CF who can't do things or needs special treatment. We want to be normal, just like you.
  • Teach your child the right way to deal with the disease. Be open in your communication and tell in a playful way why we have to pay special attention to certain things and why we do our therapy.
  • Water that stands around is poison to us. We should drink as no water that has been standing around for a few days (1-2). In addition, indoor swimming pools, earth, sandboxes, etc. are a problem for us. But that doesn't mean that we should keep our hands completely off it. Playing is also part of being a child.
  • Egal wie oft ihr uns sagt, dass wir unsere Therapie regelmässiger machen sollten, ich denke dass bringt nicht viel. Die Therapie sollte ein wenig Spass machen, vielleicht kennt ihr ein lustiges Spiel, dass mit der Inhalation verbunden werden kann. Oder wieso inhaliert ihr nicht gleich mit? (Natürlich nur mit NaCL)
  • Nutrition is important for us. A lot of fat is essential, but not from sugar. So don't stuff us with sweets, but think about a healthy alternative. 
  • Due to the high salt loss at warm temperatures you should always have salty snacks and plenty of water with you. 

From my own experience

In my childhood, I wasn't very interested in what I had for a long time. I was a healthy CF child and had few problems. However, I often had disagreements with my parents. Because of the CF they were of course very careful and worried. With many things I did not want to see, why I must do them or let them. Alone when everyone in the class went to swimming lessons and I had to stay at home, it was stupid for me. Afterwards I see such things of course. Over time I learned more and more about CF. This of course helped me enormously to understand the opinion of my parents. Often I didn't understand why my parents worried so much, today I know. Also only thanks to their care and caution I feel so well today. I am eternally grateful for that. I think many CF families are similar, it almost belongs to our education and development. 

From my own experience

In my childhood, I wasn't very interested in what I had for a long time. I was a healthy CF child and had few problems. However, I often had disagreements with my parents. Because of the CF they were of course very careful and worried. With many things I did not want to see, why I must do them or let them. Alone when everyone in the class went to swimming lessons and I had to stay at home, it was stupid for me. Afterwards I see such things of course. Over time I learned more and more about CF. This of course helped me enormously to understand the opinion of my parents. Often I didn't understand why my parents worried so much, today I know. Also only thanks to their care and caution I feel so well today. I am eternally grateful for that. I think many CF families are similar, it almost belongs to our education and development. 

Do you have questions?

Would you like to know more? Would you like to have an exchange with someone who has CF? Maybe I can support you a little in this situation. Maybe my parents can give you some tips. After all, they have 26 years of experience with children with CF. 

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