OUR CDH BABY
My wife and I are expecting our third into the world on or around October 28th. Sometimes things don’t go as planned in this life. As we went in for our 22 week ultrasound we were so excited to see our little baby bean on the big screen! He was stubborn and didn’t want to face the camera so the ultrasound technician could get the images she needed so it took her some time and patience. We sat there waiting and waiting what felt like an eternity for the doctor to come in after viewing the ultrasound and tell us everything was great and we were good to go as she would see us in another four weeks but that’s not what happened. Instead she came in an said the words no parent ever wants to hear… “There is something wrong with him.” Those words were gut wrenching and something we will remember for the rest of our lives. He was diagnosed with a condition called CDH (congenital diaphragmatic hernia). We have been through so much together and this by far was the hardest day of our lives and continues to feel like a bad dream we can’t wake up from.
Our precious unborn son has a hole on the right side of his diaphragm. In the growth process his diaphragm didn’t close all the way allowing organs to move from the abdomen up into his chest cavity. He now has some of his bowel and liver that we know of at the moment where his lungs should be causing underdeveloped lungs. This condition is only seen in roughly 1 in 4000 babies with the national average for survival being around 65-70 percent. Rhett will be placed on a feeding tube and oxygen once he is born. If doctors are unable to stabilize him he will be placed on ECMO which is the highest form of life support where he will remain until he is stable enough to perform the necessary life saving surgery to place the organs back in the abdomen and fix the hole in his diaphragm. This could be anywhere from days to months, the length of which is still unknown. He will be a long term critical care inpatient baby for quite some time. If god is willing we get to take our sweet baby home and that is just the first chapter in Rhetts story. He will still need to be on a feeding tube and receive extensive care long after he leaves the hospital.
Due to this my family and I will be relocating to St Pete to be with one of the best doctors in the world for this condition at All Children’s. We will be renting a small home for the months he will be in the hospital while we maintain our home mortgage and other bills/living expenses. I will be out of work, most of it being unpaid since this will require more time then FMLA allows. We aren’t even sure yet of what insurance will cover and what we will need to come up with out of pocket. With that being said we all know life continues no matter the circumstance and we will do whatever it takes to make sure our son has the best chances of survival even if that means being without income for some time to be able to be by his side. Anything will help come October wether it’s a meal, a phone call, or just your thoughts and prayers.
My family thanks you and appreciates you reading our story about Rhett.
With love the Dorio Family.