Explaining CDH to Kids
As parents, one of our primary roles is to teach our children all of the important things but, as CDH parents, we have the added task of teaching them specifically about a rare and complicated medical condition. This can be super intimidating, especially in thinking about how to strike a balance between sharing enough for them to understand, but not overwhelming them (or yourself!) at the same time. Whether you are explaining CDH to your CDHer as they get older or to their siblings, discussing this with kids does not have to be scary. In fact, it is very likely that they will ask about it or bring it up before you have the chance to yourself! Kids tend to know when things are "different" or when something is up, so meet them where they are. Here are some tips for making sure you have a helpful and loving conversation that nurtures both their curiosity and your self-care.
Don't avoid the topic! There are age-appropriate ways to explain anything and children are naturally curious. When they express an interest or ask a question, embrace the opportunity. We will include some samples below of specific things you can say if you need a boost, but the important thing is not to ignore the opportunity or discourage questions.
Practice makes perfect. There is no shame in thinking about how you want to say certain things ahead of time or even rehearsing certain important aspects of what you want to share. Children often want to know the specific story of the time they were born and, for CDH parents, that can be a difficult time to talk about. Because of that, this could be an excellent part of your story to think about crafting ahead of time.
Know your child's style. Is your child imaginative and a lover of stories? Talk about CDH in narrative form. Use fun language, tell them about the people and places involved in their story and funny moments from their hospital stays, along with the nuts-and-bolts information. Are they more science-focused and concrete? Use more anatomical language and explain procedures (in age-appropriate and understandable ways). Either way, do try to use the real terms for things like the diaphragm, lungs, heart, etc. This is an excellent opportunity for vocabulary and will help them make connections later.
Use visuals! There are so many great resources out there to help explain CDH and this can provide a really fun chance to get hands-on with your kids as well. You can work as simply as pulling pictures from Google and hospital websites or get as creative as drawing your diagrams or using something like the SmartLab Squishy Human Body to move organs around and show your child or their siblings how their body started off a bit differently. Don't forget to show your child on their own body as well – help them learn to love their scars by explaining how they got them and how brave and strong they are to have earned them.
Encourage questions. While talking about CDH, it is natural that your child will have a lot of questions – this is really healthy. Pause your conversation as you need to and encourage them by saying things like, "that is a really cool question!" or "what do you think about that?" This lets them know that this is a conversation, not a lecture and invites them to express their own curiosities.
Prepare for some fear and share your own feelings. This can be so difficult, but any time we are talking about medical situations, kids can, and often do, get scared. They may ask questions like, "will it happen again?" or "am I still sick?" Answer those questions compassionately and honestly.
When it comes to these ideas for things to say, make sure you keep your own child in mind. One 4-year-old might be ready to hear a full technical explanation while the next one might not be, so adapt everything you read here to make sense for your child. Reassure your child that they are strong and capable and that you will know what to do and how to take care of them if they ever do need to go to the hospital again – even for normal childhood things like a fever or a bonk on the head!
Some examples to get you started:
"I noticed you've been looking lately at the scar on your [tummy/stomach/belly/abdomen.] Do you want to talk about it? Okay! Before you were born, we found out that you had a very unique problem called Congenital Diaphragmatic Hernia. We call it "CDH" because that's easier to say! What do you think that might mean?"
"What that means is that when you were a tiny baby, an important part of your body called a diaphragm had a [booboo/hole/didn't form all the way], and your organs in your belly like your intestines, stomach, and liver moved up into the top of your chest. That made it really hard for your lungs to grow. So, we found out that we needed to make sure you got really special doctors to take care of you after you came out." This is a good time to mention your medical team, especially a favorite doctor: “we were pretty worried about you, but your special doctor made us feel better about you being safe."
"When it was time for you to be born, we had to be ready for you to go to the doctors right away because it wouldn't be quite safe for you to cuddle with us yet. So, they took you into a special room and helped you start breathing. You needed some help from a special machine called a [cpap, ventilator, ECMO]. But we got to see you and you were so cute and peaceful! We loved you right away."
"When you were (X) days old, the doctors needed to do your surgery to put your organs back in the right place and fix your diaphragm so that everything would stay where it needed to stay and to help your lungs have some room to grow. To do your surgery, the doctors had to go inside your belly and work really hard to put everything in its right place and give you a new diaphragm. Then they had to sew your belly back and that's how you got your scar!"
"After that, you still had to work pretty hard to keep breathing and growing and we stayed at the hospital with you for a while. Our favorite nurses would help us give you baths, change your diapers, and take good care of you. While you learned how to breathe better, you got to try even more new things, like drinking milk and playing with different toys."
"Sometimes, you had a hard time eating, so after a while, we had to try some different things." Then explain g-tube if needed.
"I know that might make you feel different from other kids, but try to remember that what makes you different makes you strong."
