Meet Roman
ROMAN’S STORY
December 2, 2025 - the day that changed our lives… we started the day so excited for our first anatomy ultrasound at 20 weeks pregnant, but that excitement quickly turned to worry when the sonographer got quiet and said she needed to get the doctor to review the images. We had never heard of Congenital Diaphragmatic Hernia before, but we fully know what it is now, and how hard this diagnosis is.
After spending two days spiraling down the Google rabbit hole, I finally found some hope and kept seeing the name Dr. Kays in St. Petersburg, Florida. I sent a message through Johns Hopkins All Children’s Hospital website and quickly received a call from Joy. After talking with her about their success, I knew this is where we would be going for baby Roman’s care.
In January 2025 we had our initial appointments at JHACH and everything looked okay. The hernia was classified as moderate to moderately severe by Dr. Kays but he gave us a great prognosis and plan.
Fast forward to April 9, 2025 - Roman’s birthday! My delivery went smoothly and the CDH team took immediate care of our cute little dude. At 5 days old he had his repair surgery and has been steadily progressing since! At 11 days old and was moved from the ventilator to CPAP on Easter Sunday! Then quickly worked his way to starting feeds and wall oxygen.
We spent a couple of weeks working on feeding, making sure that he was intaking enough calories and gaining weight consistently. He had a couple of setbacks involving vomiting along the way, but overall was a great eater and was able to be discharged on May 19th, 2025!
We planned to stay near the hospital for a few days and it was a good thing we did. On May 22nd he was readmitted for mid-gut volvulus (bowel obstruction) and had to have his second surgery at only 6 weeks old. He is now slowly working on feeds again and is letting everyone on the floor know that he would love more milk! We are hopefully that this will be his last major CDH surgery and setback, and we will be able to go home for real in a few weeks!
We are so thankful to have found an amazing CDH team at JHACH and to have received a grant from the Fore Hadley Foundation to help us while we are relocated to south Florida. It really takes a village to help these strong CDH babies and their families, and we are lucky to have found ours!
As told to Fore Hadley by Samantha Giancalone 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 Clare’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.