Please keep in mind that the shared information below are from my notes that I took during the phone call with our doctor. I may not have understood everything completely or may have mistaken information given. However, this is what I took away from the conversation that we had.
I received our long awaiting phone call from Dr. Cibulskis on Tuesday at 2:32 pm. She stated that the autopsy ultimately confirmed what we had already known from Jackie’s surgeries. His heart defect, underdeveloped right lung, fusion of liver and lung, VSD, and herniated diaphragm are all symptoms that can generically be placed under two syndromes. Scimitar Syndrome and Hypogenetic lung syndrome. Both syndromes are extremely rare and do not have much research. There really is no known cause. There are a few theories including inflammation and blood vessel issues causing poor blood circulation during fetal development. There is also not very much information regarding reaccurance. Hopefully our extensive genetic test can shed some additional information regarding reaccurance for us in June.
Other than that the autopsy confirmed the following:
-Jackie’s right kidney was thickened and many of the cells had died after the first and second surgeries
-His intestines were malroated and were adjusted during the first surgery
-Hemorrhage in liver after his first surgery
-Testicles hadn’t descended.
-Blood was not flowing properly to the heart
New findings included:
-Adrenal gland was attached to the liver and not the kidneys
-Spleen was shaped more like a fork instead of a triangle
-Blood clots were found in the veins leading to the kidneys, they could not confirm if there was total blockage
Doc and I discussed that with the following information it does not appear that the team would’ve approached Jackie’s surgeries any differently. The team will meet at the end of April to discuss the results of the Autopsy. I am planning to call Doc at that time to inquire about what was discussed. I have also sent a request to medical records to receive the official copy of the autopsy report.
My conclusion regarding these results are that our son was a complete jigsaw on the inside and he was not meant to live with us here on Earth. He has a bigger purpose. He came to being to teach others and to help with medical advancements to save future kiddos lives. His quality of life would not have been great, he most likely would’ve lived in a hospital and would’ve had challenges every single day. He was not meant to suffer or live that life, nor were Jack and I meant to live that life with him. We were not meant to live appointment to appointment, live in a hospital…that is not our Journey either. I know that we have a bigger purpose, Jackie fuels me to be a better person everyday…I am just still not clear on what our purpose is just yet. And maybe I never will…but I will continue to live everyday in honor of Jackie and I will continue to try to make him proud. I do have mixed emotions at the end of the day…on one hand I would like nothing more for the genetic test to come back positive so we can at least have an explanation…but on the other I would rather our chances of this happening again be less than 1%. Unfortunately…I can’t have both.
Please feel free to reach out if you have any questions. I am more than happy to talk.
We love you Jackie!
#thisoneisforJackie #ourjackofhearts #angelmommy