Summary-

Our son who is due in May was diagnosed with a congenital diaphragmatic hernia (CDH), a rare condition that requires immediate surgery and a long-term stay in the NICU. As parents, we are doing everything we can to give him the best possible care, but the journey ahead is filled with uncertainty and challenges. We are preparing for his surgery and the many weeks he will need to spend in the hospital, hoping for the best outcome for our little one.

The financial strain of this situation is overwhelming. We will need to travel from Oregon to Johns Hopkins All Children's Hospital so our son can receive the specialized care he needs. The costs of medical bills, travel, food, and a new insurance premium to access care outside our home state are adding up quickly. Your support will help us focus on our son's health and being together as a family during this difficult time, rather than worrying about how to cover these expenses.

Read the Whole Story Below-

Our son’s name is Levi James Snook.

He is a precious gift from God. When we talked about having another child this summer we were so excited and so thankful that we had conceived our son.

On January 16th, we went to our “routine” anatomy scan-—that quickly became the most terrifying day of our lives.

After our scan the doctor came in and told us there was something on the scan she needed to discuss with us. We learned quickly that our son was diagnosed with CDH (Congenital Diaphragmatic Hernia). We learned that he has a hole in his diaphragm and his heart is on the wrong side, his left lung is compromised and unfortunately this has made it so his little lungs can’t develop to the size they need to be. After hearing this information we were told how severe this diagnosis is and that we needed to look at survival rates. We knew we would need to deliver at a high risk unit and due to severity we would be needing to relocate to a hospital that specializes in CDH surgery, NICU care.

Whether you’re a parent or not I’m sure you can imagine how devastating this information was. CDH has multiple levels of diagnosis: mild, moderate and severe. Levi went from a severe diagnosis meaning ECMO ( the life support to help babies breathe ) might not help him survive after delivery. Then we were told they noticed a slight improvement in his numbers and that the ECMO treatment may or may not be needed but they are unsure of this until his delivery. If this were the case he would have other options for breathing support, surgery and recovery. Either way I will need to be deliver in the high risk unit in St. Petersburg, Florida. Then he will be directly supported by the CDH team at the highest level of NICU in order to prepare for his life saving surgery and treatment. We are unsure how many months Levi will need to be there (estimated time is 3-4 months) but we will need prayer love and financial support during this difficult time.

I am so grateful to live in 2026 and that we do have the life saving medicine available to save our son’s life. I will be seen weekly at our local Legacy Fetal Medicine office for scans. We have a referral and after doing a lot of research have made the decision to relocate before birth and pursue care at John’s Hopkins All Children’s Hospital in St Petersburg, FL. They specialize in CDH surgery and will be able to take on Kristin and Levi's medical care. We have done our intake paperwork and will relocate to JHACH during the first week of April. I will then need to be at the location to be monitored and receive scans beginning when I am 32 weeks. However, Colton will not be able to leave his job position due to financial reasons, until closer to my induction date. (May) - An entire month later. As you can imagine moving to the Ronald Mcdonald house with my children and without my husband is going to be a challenge financially, emotionally and all of the above. My Mother will be joining us so that I am able to receive medical care, prenatal monitoring and our two boys 3 and 5 - will be cared for during the first few weeks.

We‘ll have Levi at around 37-38 weeks and he will be taken immediately to the CDH team to be stabilized. He will have surgery a couple days to a week later, depending on how long it takes for him to be ready, after he comes out of surgery he will recover on the CDH ICU floor. We will stay in Florida for as long as it takes for him to be healthy enough to fly back to Oregon. We are hoping and praying that he will first of all have the best care and that he can come home without oxygen and a feeding tube but we are also aware that this is a real possibility.

We are so thankful for having medical science and technology to help him but of course we are mourning how different this birth will look. We won’t be able to hold our son for several weeks and we’ll be immediately separated at birth-—this part is hard. Not being able to hold my baby and also seeing him struggle to breathe. I am in constant prayer about this period of time.

We started a campaign to share with you our story along the way, ask for prayers and share the areas we could use the most help- from food, to transportation to medical bills and other items needed to help us during this time- even the smallest contribution will help. Sharing with all of your friends and family through social media will help us even if they make a small contribution. Thank you for your love and support.

We are so thankful to have your support and prayers. Every donation, share, and kind word means the world to us as we navigate this journey. Thank you for standing with our family and helping us give our son the best chance at a healthy future.