At our 19 week anatomy scan, the ultrasound tech noticed our sweet Julien’s heart was pushed over to the right side. Upon further investigation doctors initially diagnosed him with a CPAM (congenital pulmonary airway malformation, a few weeks later his diagnosis changed to CDH. We immediately began our research to find the best people to care for our baby upon his arrival and fortunately for us were pleased to find out that the University of Michigan Medicine program had one of the best and most mature programs in the country – and was a relatively safe drivable distance for us. A Wolverine from Day One we guess!
Originally we’d prepared for a scheduled induction but Julien had other plans – a much, much more grand entrance! Julien Anthony was born on August 23, 2018 via emergency C-section after laboring for about 24 hours. He was born at 37 weeks due to high levels of amniotic fluid and weighed 7 lbs, 5 ounces.
Julien was intubated immediately after birth, stabilized, and spent his “honeymoon period” (the first 72 hours after birth when things can go south pretty quickly) being monitored for any changes. Luckily, he maintained a very even keel and was able to have his CDH repair surgery on day four. Done thorascopically (his scars are teeny tiny!), a Gore-tex patch was used as there was very little diaphragm on his left side - his spleen and bowel loops were herniated but everything else was still down.
Post-surgery our little miracle boy did incredibly well and exceeded all expectations. We were told to prepare for a minimum of 1-3 months in the NICU – but still one for a dramatic exit, Julien decided that 3 weeks and a day was enough! He was able to come off of all breathing support within a week after his surgery, he struggled with eating for a few weeks but we were able to work on it at home using an NG tube. Within 3 weeks of being home, Julien was taking close to 100% of his feeds by mouth and many of his issues resolved when we took the NG tube out. He still struggles with reflux and gaining weight but otherwise is a very healthy and happy boy.
Now over four months old, he will continue to be monitored closely by his team of specialists at UM Medicine every few months. We know CDH will be a lifelong journey for our family but we have so much hope that he will continue to succeed and live a long and fulfilling life.
- As told by Angela Gill, 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 Julien’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.