The Snook Family

Scroll down to see updates as the Snook family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Initial Backstory

"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. I will continue to be seen weekly at our local Legacy Fetal Medicine office for scans. We have a referral and after doing a lot of research we will relocate across the entire country to 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 have now began pre natal care and we have been in St. Petes for two weeks. My Mother and Sister is coming with 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 feel hopeful because of the ability to relocate to a unit that has specialized care and in our opinion some of the best in the country. Thank you for standing with our family and helping us give our son the best chance at a healthy future."

5/1/2026

"I'm being induced on Sunday the 10th Baby Levi will have surgery 4-7 days after and then we will find out how he's doing with treatments on the cdh floor."