Baby Canyon's Medical Fund for CDH
A note from Jessica (the mother):
For those of you wondering what's going on,
On Friday, Jan 9th, I had my 20 week anatomy ultrasound, which Donovan had to miss because of his new job at Apple. It was just supposed to be a routine checkup. We had already done the initial screening which came back negative for the most common birth defects and abnormalities. There was no reason to t...hink today would be anything but another chance to see our sweet baby boy, Canyon.
Everything started off normal, but I could tell that when we started looking at his chest and heart, something wasn't right. I thought it was an issue with his heart based on all the time the technician was talking to look at that spot, but I didn't ask her any questions, knowing that she would tell me to wait for the Dr. anyway. Finally, after about 40 min, she left the room. I waited and waited and sure enough the Dr. came in. Once he told me he wanted to perform another ultrasound himself to get a better sense of what he was looking at, I knew it was serious. Then the devastating blow came. He told me that Canyon has a birth defect called CDH or Congenital Diaphragmatic Hernia, which is basically a hole in his diaphragm that has allowed his internal organs to travel upward into his chest. His stomach, intestines and part of his liver are now crowding his heart and lungs, forcing them over to the right side of his chest. As if that wasn't hard enough to hear, the news became harder when he told me that his lungs are too crowded to grow much more. With such under-developed lungs, his chances of surviving outside the womb are 50%. The blows just kept coming after he told me his LHR, (lung to head ratio) was only a 1.1, reaffirming a slim chance of survival. Then the hard hitting fact... if we want to terminate, we only have 6 days according to TX regulations. That's not nearly enough time when faced with a literal life or death decision.
What can you do? Pray for us, send positive thoughts and vibes. Picture our family as 2 strong, loving parents with 3 perfectly healthy and happy boys. I'm hoping that enough positivity, love and visualization can turn this around in our favor. I'm more of a realist than an optimist sometimes and my mind has seriously gone haywire with facts and research that has led me more toward fear and doubt. My mind is all over the place and not for my benefit. What I need now is for you all to help me turn this around by being positive and seeing only the good in the situation. That will in turn raise our vibration and put out the strong vibrations that we need to get through this. I know that reason and logic will eventually go out the window and emotion will take over. That is also when I'll need you all to be strong and help me stay strong. I'm not usually one to ask for affirmation, but I will need it now and in the near future.
Thank you all for your love and support!
To our friends and family that have been so supportive during this trying time for our family; we wanted to share some VERY good news with you. I was in Houston all day yesterday to meet with specialists concerning Canyon's condition. After a long day of testing and consultations, I had my final consult to go over the results. Canyon does indeed have a left sided CDH, but it's not as severe as we were led to believe. He has something called a hernia sack surrounding his stomach, intestines and spleen. The presence of this sack saved our little boy’s life!! Because of it, we now know that his organs and intestines are not roaming around loosely in his chest which will make moving everything back into place much easier. They are now giving him a 95% chance of survival after birth verses the 30-50% we were given previously.
From the MRI scans, they were able to determine that only 26% of his liver is up in his chest and his right lung is almost the normal size and appears to be fully functional. His left lung is overcrowded and under developed, but the Dr.'s said that his lungs will continue to grow up to his 8th year, so they are not very concerned about his lungs anymore. They said they are 46% functional and that most babies his age (23 weeks) only show 50% lung function, meaning he has healthy enough lungs to support him. This also means he will not require ECMO after birth and should be able to breathe normally on his own. Because of this terrific news, we will not have to undergo the fetal tracheal occlusion surgery that we were so worried about. This means he can be born naturally instead by C-Section and that he should qualify for a much less invasive procedure to correct the diaphragmatic hernia after birth. He was facing open heart surgery and immediately going on bypass after birth, so this news is also a huge triumph!
We truly believe that it is because of all of you sending prayers, love, support and good energy our way that our baby is going to be a CDH survivor! We've felt the outpour of love and just want you all to know how much we appreciate you banding together to support us and our family. It truly takes a village and we recognize that we wouldn't be in this place without all of you. Please continue to pray, visualize and send good vibes our way. It is already making a difference and we want to keep that momentum going to ensure nothing but good news from here on out. Also, please share our "gofundme" page and consider helping us raise funds to support Canyon and his future. http://www.gofundme.com/kq0icg
Light & Love,
Aria & Donovan
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