RSV is a highly contagious respiratory virus. In most healthy individuals it presents as a common cold and isn’t usually a big deal. However, in babies with compromised lungs, like CDH babies, it can be much more serious.

I still see the world as a giant germ. I still cringe when I see her lick ice cream off a table, touch the bottom of her shoes, or put her fingers in her mouth, but because she was so well protected early on, I know she will be okay.

Together with his mother, Tijmen told his class about all about his disease - CDH. When he and his friends told them about the mountain bike event, his classmates were speechless. “They really thought it was a great action, and the teacher was very proud.”

One of the hardest parts of staying at a hospital long-term can be having to spend the holidays away from our loved ones. Even though you may not be able to recreate every tradition or the heart-warming feeling of being at home, there are many things that you can do to bring joy to your family and make the most of the hard days in the hospital! 

Costumes for medical kids can sometimes get a bit tricky. Every child should feel included in the fun, so with a little extra craftiness, all our Tiny Heroes can join in whether you are in the hospital with your child or at home. 

Long lines, Florida heat, and big crowds can be scary for CDH kids that have been sheltered for so long, but with some research, thought, and planning, you can make it a magical trip they will never forget!

I love that we use these beads to teach her all about her journey and what she overcame. To show her how much courage she has, how strong she is, and remind her that she can do hard things no matter what she is faced with in life.

I was so worried that I was ruining my kids’ lives by moving them so far from everything they knew, and it turns out I had nothing to worry about. My children were positively spoiled by the love and attention from everyone out there, they made lifelong friends, and got amazing experiences they would not have been able to experience otherwise.

Once you are given a CDH diagnosis, several things generally come to mind, one of which may be, “How Will I afford a CDH baby?” The idea of medical bills, time off work, and expenses related to relocating may make everything seem impossible. However, there are several things you can do to begin saving and help offset the cost.

I know the thought of going through the CDH journey, miles away from family, is very overwhelming. It is important to remember that ultimately this sacrifice gives your CDH baby a greater chance of coming home faster and in much better health, which could ultimately save money and allow your family to find a new normal, at home, more quickly.

If you aren’t given hope, if the doctors do not believe in your babies ability to survive, get a second or third opinion. Seek out a quality CDH surgeon at a hospital that has a top-notch CDH program. Find someone that believes in your baby’s ability to survive and thrive. Find someone that will fight for them every step of the way and has the skills to redefine impossible.

We were at a dead standstill with a baby who was miserable while attempting oral feeds and missing out on developmental opportunities because he was confined to a hospital room. It was time to have a care conference and discuss moving forward with a G-Tube.

If I can give you any advice, keep an open mind and remember that it’s okay if your CDH journey doesn’t go 100% according to plan. If a G-tube is needed, view it as a valuable resource and know that it helps your baby meet with success. Also, never stop advocating for your CDH baby. Ask medical professionals and lactation consultants any questions you may have along the way.

A tracheostomy provides an air passage to assist breathing when the usual route is either blocked or reduced. CDH babies may need a tracheostomy to facilitate breathing, dependent on their diagnosis.

Flying with your medical complex CDH baby, all of their equipment and the fear of germs can be very overwhelming! We have put together a list of our best tips and tricks to make this experience as stress-free and easy as possible.

My advice to families facing the decision about whether or not to grow their family is this - stay positive and don’t let the fear of CDH keep you from pursuing your dreams and growing your family. There is a 2% chance it may happen, and if it does, there are doctors with over 90% survival. There is hope!

I’m always tempted to make big promises when we’re getting ready for a medical procedure. I want to tell my kiddo that we’ll go on a big trip or have a special adventure as soon as we’re done. But I know that recovery can be unpredictable, and I never want to make a promise I can’t keep. Instead, try to find something you can deliver on, even if things don’t go as planned.

“Being an advocate” was something I had heard of, but it really didn’t mean much to me until I received our CDH diagnosis. I had mostly just heard of that phrase as it pertains to “patient advocacy” when I was going to nursing school many years earlier. I never guess that being an advocate would be a role I would take on in a new way, and become one of the many hats I now wear as a parent.