A friend of mine from childhood recently had a son on June 13th. Castiel was diagnosed with CDH, which stands for Congenital Diaphragmatic Hernia as well as a hole in his heart, Artial Septum and a narrowed Aortic Arch. He has already undergone one surgery, but will require another in the near future. As bills are mounting my friend and her husband have fallen on hard times and could really use some help. These funds will assist the family with medical bills, daily expenses and transportation (as their Tahoe just blew up)
For those of you who don't know what a Congential Diaphramatic Hernia is....
A hernia is a "general term used to describe a bulge or protrusion of an organ through the structure or muscle that usually contains it." The defination is known to many people and it may be the reason so many think congential diaphramatic hernia is no big deal.
CDH is one of the deadliest birth defects that exist!!
A diaphramatic hernia is a birth defect in which there is an abnormal opening in the diaphram allowing part or sometimes all of the organs from the belly to go up into the chest cavity, compressing the heart and lungs.
As a result, the intestines and other organs in the abdomen can move into the chest and compress the devolping lungs. This prevents the lungs from growing and developing normally, which can cause reduced blood flow to the lungs and pulmonary hypertension.
This is a note from my frind on June 3rd with more details about just the begining of thier nightmare journey:
There is so much that the doctors don’t know about the severity of condition. We had fetal echos, fetal MRIs, so many growth ultrasounds and there still isn’t a 100% clear picture of how bad it is. Here is what we do know.
The hole in his diaphragm is large enough for his stomach to flop back and forth. During weeks 20-32 we were told his liver was at least 1/3 up in his chest. At his 32 week ultrasound we were told his liver was no longer up in his chest. This was pretty damn good news. The liver is a hard spongy organ and it has zero give for the lungs to grow. The stomach and the bowels can be squishy and have some give. After his last round of tests, we met with a couple of the surgeons who will be on his care team at CHOP in Pittsburgh. Castiel’s left lung is 1/10th the size it should be, and his right lung is about 50% the size of a normal lung. I know, that sounds pretty bad. This is why they have given him such a “guarded prognosis”. The important thing to remember is that it is not how much lung he has, it is the FUNCTION of the lung he has. If that little bit of a lung lung works the way it should, he will have a pretty good shot. We were told to not even begin worrying about his hernia repair surgery until he is able to come off of ECMO. What is ECMO you ask? Basically it is a lung and heart bypass machine that will allow for his lungs and heart to rest and gain strength. This is why he was a given a 50% chance at making it. Only 50% of the babies who have to go on ECMO will survive.
Here is how it will go (as told to us by his care team). On Tuesday June 13th, we will go to the hospital for a C Section. Along with my doctors there will be a NICU team for Castiel. As soon as he is born he will need to have a breathing tube put down his throat. He will not be able to breath on his own. This means that I will not get to touch my son, let alone hold him. I will not even hear him cry because he will not be able to cry. Let that sink in. I have chosen to have a clear drape for the C Section so that Carl and I will at the very least be able to see his beautiful face before he is whisked away by his Nicu team to stabilize him. We were told he would have to have tubes through his nose going to his stomach to make sure it doesn’t expand and compress his lungs further. He will have IVs and monitors and PIC lines. He will be heavily sedated and on a high frequency breathing machine. (Flashback to what my brother Tommy looked liked when he was n the hospital). Once he is stable enough for transport, he will go in an ambulance and be taken to CHOP - about 15-20 min away. I will remain at Magee for my recovery. That means that I will not even be in the same hospital as my son. CHOP does have cameras on their babies in the NICU so I will be able to see him on he computer. I didn’t have that option when Tommy was in the NICU. Once at CHOP, he will have his echo and his MRI...all the tests to find out the extent of his condition and all that. His heart is pushed up against the right side of his body. Its basically smooshed. As far as the doctors can tell, his arch is narrow. They won’t know if it will need to be repaired surgically or if it will just pop back to normal size once it has room to do so. There are a couple of concerns about parts of his heart, but nothing major and nothing that can’t be treated with meds and surgery if necessary.
The first 48 hours are considered a honeymoon period. That’s how the doctors described it to us. Carl will be going between the hospital where I am and the hospital where Castiel is. I am not sure how much information I will have access to during the first coupe of days. We will give updates as they come, post pictures if we have them.
- Morgan Nuchols
- Heather Hodgkiss
- Jessica Anne Lippett-Adams
- Lori Carson
- Nick Adourian
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