If You Are A Parent Of A Recent CDH Diagnosis, I Want You To Know….

If you are a parent of a recent CDH (congenital diaphragmatic hernia) diagnosis I hope this post finds you.

I want you to know something:

There is hope. A lot of it. Even for the most severe cases. Even in the darkest hours. There is hope.

Even if you find yourself, right now, fresh from your twenty week anatomy scan, with that diagnosis sitting in your hand and your medical team isn't giving you a promising outlook. There. Is. Hope.

I too have set where you are. In a sea of hopelessness with no one understanding. My son's CDH was undiagnosed. I did everything "right" - I was a textbook perfectly healthy pregnancy, and I still had the rug pulled out from underneath me. His CDH was still missed. But this isn't your fault.

You did nothing wrong. You did not cause this. Do you hear me? Do not ever let yourself think otherwise. You did nothing wrong.

On my worst nights, I scrolled and scrolled looking for any positive CDH stories and outcomes. You may be doing that right now too and that's how you found me. I want to remind you of just how strong these babies are. Time and time again they have "beat all odds" when it did not make sense. I once had the sickest baby in the unit. The one who was struggling on ECMO and stayed on it for weeks - the one they didn't think could come off. The one that kept facing infection after infection. Who couldn't get his surgical repair for a month. The one that was on every single pulmonary hypertension medication and nothing was helping. And so on. The one that had multiple "talks" with doctors more times than I would like to remember. I was told to prepare for the worst. But I kept showing up and doing everything I could. CDH is a very misunderstood diagnosis. And I'm going to be frank with you, there are a lot of well meaning providers that just are not equipped to handle CDH and it's unpredictability. The care team you select is so important. There is so much financial support available to CDH families to be able to pick the right hospital with the right CDH care team. Even if that means relocation.

Foundations to reach out to:

@forehadley @survivingch @mytinyhero

@chfoundation

@chinternational

Eden Calhoun foundation

And more - many of these have fo groups and guides on their websites of important resources. Also please read my CDH resources highlight on instagram.

Most people in your life are not going to be able to fully understand it. What it entails. The severity. It's not just a "hernia" and surgery doesn't make everything "go away". Find your tribe of CDH parents. Join the Facebook groups for support. I promise you, having other CDH families to speak to is one of the best guiding lights you can have on this journey.

I heard time and time again: He's not following the textbook. There's no literature to explain what's happening with him. We don't know why we isn't getting better.

But miracles still happen that there isn't a textbook answer for. The odds may feel against you, but you can beat the odds.

CDH is a marathon. It's not a sprint - but you will get thru this.

I never thought I would get to the "other side" and now, almost a year out from discharge, I can tell you that you will. The journey will be long, it may be 1o steps fwd and 3o back but there is light at the end of the tunnel. Even the darkest one. The days are long. The nights may be longer. But even when you feel like shattering, you'll show up. You'll be bedside. And you will be the biggest cheerleader and beacon of hope to your little warrior.

CDH is the worst and best thing that ever happened to our family. But I would do it all again, every single day, if it meant having Everett.

I would still choose him. 1000x times over again.