The Burkes Family

Scroll down to see updates as the Burkes family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Initial Backstory

My husband and I found out we were pregnant with our first baby late October 2024 and were over the moon. The second week of 2025 we had an early ultrasound at 10 weeks, shortly after finding out through early detection that he would be a boy, and were told that our baby had something in his chest. Two weeks later we received his CDH diagnosis. We live in Northern California right outside of Sacramento, and unfortunately, they’re not a lot of hospitals or teams that specialize in treating these babies so In March, we flew to St. Petersburg Florida for a consult with the CDH team at Johns Hopkins All Childrens Hospital. We plan to relocate towards the end of May and scheduled a delivery in June for our son Roman. However, Roman had other plans and on Easter Sunday, after spending the weekend in pre-term labor, and after an ambulance transport to a Level for NICU in downtown Sacramento and doing everything we could to stay pregnant, he joined us early that morning at 29 weeks premature weight 2 lbs 8.6 oz and 14 inches long. Everything about his delivery was chaotic and unexpected, including how well he did once he was born.  During our consult in Florida we were told that he was severe and had a 60% change of needing ECMO once he arrived. So when he was stabilized shortly after birth on a high frequency jet ventilator we were overjoyed since he would have been too small to be placed on ECMO if he did require that level of support. However the afternoon after he was born he was also diagnosed with a Tracheoesophageal Fistula. His second day of life he underwent his repair surgery, and during the operation the surgeon was also able to complete a temporary repair for his TEF and place a gtube. After 4 weeks in the NICU where he was delivered and underwent numerous battles against infection and numerous unplanned extubations, we realized that Roman needed a higher level of treatment from experts both in CDH and TEF. At exactly a month old, the Johns Hopkins team sent out their transfer team and moved him from Sacramento California to St Petersburg Florida. Since getting to Florida Roman had undergone 2 additional surgeries for his TEF and has been slowly making progress with his respiratory support. He has gotten sick two more times and had a failed extubation earlier this month, but has since progressed to cpap and is making steady progress. He has a long journey ahead of him but he has proven what we already knew when we got his diagnosis, that he is strong and a gift from God. He still has a long journey ahead of him, but he has and will continue to prove how resilient he is.

Update 8/27/2025

Roman had a CT last Monday where we confirmed that he had reherniated. On Wednesday he was in the OR for 10 hours to repair his prior correction. He began having complications Wednesday night and on Friday night had to be placed on ECMO. He is much more stable and is able to rest and recover from surgery with the additional support.

Update 9/30/2025

Roman was able to come off ECMO last Wednesday and has been gradually weaning off vent support since then! He spent longer than we hoped on ECMO and had to go through a full circuit change, dealt with a blood infection, and had numerous sutures come undone during his 33 days on, but he is doing well after a month of rest and is finally gaining some weight. He turned 5 months old while on ECMO and he officially weighs 7 pounds 8 ounces. He is also back on milk feeds through his g tube.

Update 10/31/2025

Roman has surgery tomorrow on 10/30 to repair his airway due to severe tracheomalacia. He’s had two failed extubations this month and we’re hoping this will help his floppy airway and allow him to make strides in weaning his respiratory support.

Update 11/30/2025

"After Roman’s tracheopexy we tried extubating again but after a week he had to be re-intubated. Roman will now be getting a trach next Tuesday!"

Update 1/4/2025

"Roman got his tracheostomy earlier this month and since recovering from surgery has been thriving! He is breathing comfortably on minimal support and is fully off ALL SEDATION!! He now gets all of his medications through his gtube. We are still several weeks away from even looking at discharge, but Roman is making progress and doing so well."