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Jun 21, 2018 Latest post:
Aug 30, 2018
This journey began in January when at our 16 week anatomy ultrasound the Dr found some anomalies. We were consulting with the maternal fetal specialists and the ultrasound tech first spotted the stomach in the same plane as the heart. This was significant as it suggested our son had a left-sided diaphragmatic hernia. A diaphragmatic hernia occurs when the diaphragm doesn't properly form causing the abdominal contents (intestines, stomach, sometimes liver) to invade the chest cavity. The chest gets overcrowded with intestines and causes underdeveloped lungs. This insult to the lungs sets in motion respiratory difficulty for any baby. We also learned of other defects such as a ventricular septal defect and an abnormally shaped cerebellum. There was also talk of his kidneys at this appointment. They told us his kidney's were dilated more than they should be at 16 weeks gestation. The Drs explained to us that these defects were likely associated with a genetic deletion and we were urged to do genetic testing to gain more knowledge of our son's prognosis. They performed an amniocentesis and the results showed that our son had a mega-deletion of his 12th chromosome. This deletion, we learned, involves over 100 genes. We have been told that the exact size of our son's genetic deletion has never been reported. Unlike the Trisomy syndromes and Downs, there is no literature on this deletion and still to this day Drs cannot tell us what this deletion will mean for our son. At delivery the Drs found that Dawson's hands were small and fat (an irregularity), his head was large with unusually defined suture lines, and they diagnosed him with hypospadias.
We have faith that God will sustain our family through this challenging journey! We have every reason to trust Him because he has proven Himself faithful our entire life. Our son's diagnosis at 16 weeks was such a mystery and we are still marveling at the mystery of our son's genetic deletion. God has created him so uniquely and we are astonished at the work He is doing in our son's life and in our family. Wherever this journey leads, we will hold fast to God's promises and trust His plan for our son, whatever that may look like. We learned very quickly after Dawson's January diagnosis to let go and let God. He created Dawson and He understands him more than the Drs ever will and we feel confident that He has a mighty plan in store for our baby boy! We have established an intimate relationship with God during this process. We have felt broken, stripped down, and bare but God always restores our hope, our strength, and our faith. We know that healing is not just occuring with our son but also with us. We feel God refining us and teaching us, everyday. We know that whatever hurdle God brings us to, He will make us victorious. Thank you for coming along with us on this journey and we covet all of your prayers for our son.