Each of us has been where you are. We have all felt the worst when getting that diagnosis. We all know these kids are Tiny Heroes! I hope you know that you are stronger than you realize, wiser than you seem, and worth every ounce of encouragement.

Being a working mom (or dad) is not easy – and being a medical mom who works can be even harder. Luckily, there are hundreds of families that came before us that can show us the ropes and make it all a little easier. They say raising a family takes a village, so we’ve rallied the “CDH village” to gather advice to help you navigate this balancing act.

In honor of World Prematurity Day and Prematurity Awareness Month, we celebrate all the amazing preemie Tiny Heroes and their strong families! Prematurity within the CDH community is not uncommon - you are not alone, and there is always hope out there. Although they may be tiny, they are some of the mightiest fighters! 

There is nothing easy about receiving a CDH diagnosis. The intense emotions that go along with any pregnancy, let alone a high-risk pregnancy, is extremely hard for all CDH moms. We want you to know that no matter where you are in your CDH journey – you are not alone!

I wasn’t just his mom, I was his medical advocate. I became more than that – I am a CDH mom. He couldn’t fight for himself, so I did it for him, and I always will. I found solidarity in the Tiny Hero community. We are a community. We are a community defined by HOPE.

And here we are seven years later. Life has "moved on," but the heart of Tiny Hero hasn't. We created Tiny Hero not only to share Adam's story but to support and celebrate you and your story. Though we may come from all parts of the world, there is one glue that will forever hold us together, and that is the common desire to fight for our Tiny Hero kids.

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.

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.

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.

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!

“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.

We are honored to have you be a part of this journey to infuse the CDH world with the optimism, understanding, and support that this community needs. We invite you to come along with us because together we are stronger!

I would never wish a CDH journey on anyone, but I'm so grateful for who our family has become because of it.