Owen’s CDH Story
The Thursday before Christmas, my husband and I went into our anatomy scan at 22 weeks with anticipation. As soon as we walked into the office with the doctor, we knew it wasn’t good. Nothing could prepare us for this news and the decisions we had to make for our baby and ourselves. The doctor explained he thought our baby had Congenital Diaphragmatic Hernia (CDH). He loosely explained what it was and told us we needed to get to Lurie Children’s Hospital in Chicago as soon as possible for testing. We were given articles to research on our own while we waited for our next appointment.
Hearing your baby has a hole in their body, causing their organs to migrate into their chest and cause their lungs to be underdeveloped, was nothing we had ever heard of or imagined would happen to us. The next few days were a blur of tears for our parents and family. We learned as much as we possibly could in those short days to be as prepared for our next meeting so we could keep up with all the doctor language we knew we’d soon be facing.
The day after Christmas, we went to Lurie to meet with a team of specialists (head surgeon, neonatal-cardiac specialist, genetic counselor, MFM doctor, social worker, etc.). After 10 hours of ultrasounds, an echocardiogram, an MRI, and amniocentesis, we were told the severity of our son’s condition. They explained his case was severe, with a very large hole on the left side of his diaphragm with his liver, intestines, stomach, spleen, and bowel in his chest compressing his left lung. Because of the amount of organs in his left chest cavity, his heart has been shifted all the way to the right side of his body and was also compressing his right lung. In our case, this is not linked to any genetics or caused by any reason other than a congenital disability.
They told us 1/3 of their cases were as severe as our son and only 50% survived. We were given the option to terminate our son within 4 days because of the laws in IL and also given resources out of state to perform a late-term termination if we needed more time. We were told if we continued our pregnancy to expect our son to be on ECMO (the highest form of life support), needing repair surgery within the first few weeks of life, and if he survived, we’d be looking at 9 months to a year in the NICU and a very long and hard life with our son being very delayed. We sat in a room with tears in our eyes, pits in our stomachs, and the eyes of the doctors that stared back were filled with sorrow and condolences.
Through our heartache and tears, we researched more and asked for help on the Tiny Hero CDH support page. From there, we were referred by over 100 families to reach out to Dr. Kays in St. Petersburg, Florida, who specializes in not only CDH cases but also sees the severest of cases. The next day, we called to get a consultation, and 2 hours later, we received a phone call from Dr. Kays. He started with, “Tell me your son’s name.” He proceeded to ask about our son and assured us he would save him. By the time we were done with our phone call, we felt something we thought was impossible: true and genuine hope. Three weeks later, we were on a plane headed to Florida for our consultation to give our son the best fighting chance. After meeting with this incredible doctor and his team, we felt we were in the best possible hands for this long journey. He gave us a 95% survival rate and a 35% chance of needing ECMO. He said nothing will be easy about this and that this is a more serious condition than people can realize. However, he is confident in not only saving our son’s life but giving him the best quality of life.
We relocated to Florida when I was 33 weeks, and from there, the weekly testing began. On April 3rd, at 11:38 am, Owen (meaning “young warrior”) was born via planned c-section. As soon as Owen was born, he was put on a ventilator immediately to help him breathe. We saw him for a few moments before they rushed him away to get the support he needed.
To our surprise, Owen did not need ECMO. Owen had his repair surgery 5 days after he was born. He had a large C-type defect, and he was missing 85% of his diaphragm. We were told we weren’t out of the woods yet, and most likely, he would need a feeding tube. After his surgery, Owen defied the odds and every day weaned down on oxygen. He spent 14 days intubated, 4 days on a CPAP, then switched to wall air. To all of our surprise, Owen did not need a feeding tube. During his NICU stay, the doctors noticed he had an inguinal hernia unrelated to CDH, and they performed the surgery while he was inpatient. Shortly after, he caught rhinovirus, and it kept us in the hospital for 2.5 weeks longer. Owen spent a total of 50 days in the NICU. He went home on .25 liters of oxygen and was off a couple of months later. He is in PT once a week to help strengthen his muscles. Every one of his doctors back home is so happy with his progress and says you’d never know his tough start in life.
To say that from the time we found out about our son's diagnosis until our hospital discharge had been the darkest and scariest time in our lives would be an understatement. However, we still can recognize how fortunate we are to have been able to catch his defect before birth, to have found a doctor we believed in, to have our family and friends support us, and to have each other to lean on for strength. While this journey has looked so different than how we had originally pictured it, our journey with Owen has been a transformative blessing in disguise. We're now a resilient family, stronger than we ever thought possible. While we wouldn't choose to relive the challenges, they've made us who we are today. Our mission is to empower Owen to thrive and spread hope to families affected by CDH, proving that it's not a death sentence and that there is hope for these tiny warriors.
