Meet Genesis
GENESIS’ STORY
Outside of acid reflux and newfound food aversions, pregnancy was going as planned. At most of my prenatal check-ups we spent time noticing his chubby cheeks on his sonograms and being told he was growing typically. We even surpassed our 20 week anatomy scan with the continuation of a low-risk birth plan. It wasn't until a routine sonogram around 25 weeks that an abnormal growth was noticed near his umbilical cord and a slight shift to his heart. We were sent for numerous fetal echocardiograms but they could not pinpoint the cause of the displacement of his heart. Our doctor recommended an MRI at 29 weeks and we were diagnosed with a right- sided congenital diaphragmatic hernia and a skin-covered omphalocele.
With so little time to process the diagnosis and prepare for birth we found ourselves at Ann & Robert H. Lurie Children's Hospital of Chicago for specialized care. After being induced, Genesis was born on January 2, 2024. And staying true to his name, which means "the beginning", we embarked on the start of an unpredictable journey to recovery with CDH. After birth, Genesis was immediately intubated and unfortunately contracted pneumonia. We battled the infection and almost were placed on ECMO, an infant life support device, to continue his care. On day 17 of his NICU stay Genesis was well enough to undergo his hernia repair surgery. His hernia was on the severe side of the spectrum but they were able to repair his diaphragm and omphalocele. About 10 days later they finished his repair by closing his wound that was previously left open due to the severity of his hernia size.
Now as we approach 37 days in the NICU, we continue Genesis's road to recovery as we wait to be extubated and recover from pulmonary hypertension. We could not be more grateful to the Fore Hadley Foundation for helping families like ourselves so we can focus on Genesis's continued CDH recovery.
As told to Fore Hadley by Malika McClary aka “Mom”
About the Fore Hadley Angels in the NICU Fund
Support and proceeds for the Fore Hadley Angels in the NICU Fund will go towards assisting current and future families like Alexandria’s, by providing financial contributions to assist families with the costs associated with extended, long distance travel and living arrangements. Costs that are often a must to ensure the proper specialty care for CDH babies.