Hey everyone – Jaron chiming in this time! So many of you have asked or probably wanted to know more in depth about Everly’s diagnosis and what it is? I’m going to fill you in on this one and let you know what CDH is and Everly’s specific diagnosis. Just so we are all on the same page, throughout this post is a recap of how we got here if you are new!
As I write this, I’m filled with a mix of emotions—hope, anxiety, fear, gratitude frustrations and the list goes on and on. Just a few weeks ago, my wife and I received the life-changing news that our little girl has been diagnosed with congenital diaphragmatic hernia (CDH). It’s a diagnosis that has turned our excitement and expectation of our 3rd daughter into a whirlwind of uncertainty, confusion pain but ultimately hope. We feel compelled to share our journey to help others understand not only what CDH is but more importantly to give you a glimpse into our life as we navigate and process our circumstances through the lens of faith, hope and trust in a good God. I so wish there was a manual to all of this but I am reminded once again of one of the biggest things the Lord is teaching me through this…I AM NOT IN CONTROL. And if you know me at all then you know how much of a struggle it is for me (a strong and controlling type-A personality) to not be in control. And if you don’t know me, well, now you do! But I know who is in control! I know who hold my future and my daughter’s future in His hand and He is far more qualified than me.
So onto the reason you are still reading (if you made it this far) what is CDH?!
What is Congenital Diaphragmatic Hernia?
Congenital diaphragmatic hernia is a birth defect that occurs when the diaphragm, the muscle that separates the chest from the abdomen, doesn’t form completely. This creates an opening or hole that allows abdominal organs to move into the chest cavity, which can severely impact lung and heart development. For Everly, this means she will face significant challenges, including a likely long stay in the NICU after birth. The hole in Everly’s diaphragm has allowed her stomach, intestines and spleen to move into her chest cavity affecting her lung and heart development. Her left lung is 1/4 the size is should be and the left side of her heart is also underdeveloped.
The Moment We Found Out
The diagnosis came during a follow up ultrasound. I still remember London telling me that something was wrong because it was taking to long. I told her to stop worrying but the reality of how right she was shortly became the reality we had to face when our OB came in and very clearly told us we need to talk…I don’t remember much of that conversation as I was in and out hearing medical terminology and explanations. I do remember hearing him explain that Everly had CDH, as I felt a wave of disbelief wash over me as he told us we were being referred to MU Childrens Hospital for further testing. That came a quick 48 hours later and after further testing and meeting with the surgical team, the reality of it settled in quickly as we were once again referred to our final destination: St Louis Childrens Hospital. I found myself grappling with questions: What does this mean for her? What can we expect? Will she survive?
The NICU Stay
We’ve been informed that Everly will likely spend weeks in the NICU after she’s born. The thought of seeing my daughter connected to machines and surrounded by doctors is daunting. But I also understand that the NICU is where she will receive the best possible care. The medical team has been incredible, explaining everything we can expect—from stabilization immediately after birth to surgery to repair her diaphragm and long term care in the NICU.
It’s hard to process that we won’t be bringing her home right away, but we’re doing our best to prepare for this journey. The NICU is a place filled with hope and heartache, and we know it will be a place of learning and growth as we trust the Lord for whatever the future holds.
Looking Ahead
As we prepare for Everly’s arrival, I know there will be good days and tough days ahead. Regardless of what our tomorrow holds, we trust in the God who holds tomorrow in His hands. We will not let our joy be taken away or our belief be compromised because this truth hold true. God will heal our sweet Everly…this side of heaven or that side of heaven but either way she will be healed.