Ozzy’s CDH Story

We were thrilled to discover we were expecting our fourth child on January 28, 2025, with a due date of October 7, 2025. We were both surprised and excited to welcome another little one. Our oldest, Octavia, was about to turn 5 in March, our middle child, Oliver, was nearly 4, and our youngest, Onyx, was getting ready to celebrate his first birthday in February.

We originally wanted another surprise gender reveal, just like we had with our third child. However, since our daughter was eager for a sister and would need some time to adjust if it was another boy, we decided to find out.

We went ahead with genetic testing and learned we were expecting another boy!

I had my anatomy ultrasound at 18 weeks, and everything appeared normal except that his kidneys looked a little brighter than expected. My OB wasn't overly concerned but scheduled a follow-up ultrasound six weeks later just to make sure everything was okay.

At 24 weeks, we went in for that follow-up ultrasound. I noticed the ultrasound technician spending a lot of time looking at his heart, so I knew she had seen something unusual. Since I didn't have an appointment with my OB immediately afterward, I sent her a message through MyChart expressing my concerns. The next morning, my OB called and confirmed that they had indeed found something.

They discovered a congenital pulmonary airway malformation (CPAM), a condition involving abnormal lung tissue that doesn't function properly. The CPAM was causing his heart to shift toward the right side of his chest. I was shocked but relieved that it wasn't a heart defect.

For a little background, I'm a Respiratory Therapist and work at OU Children's, so I immediately understood the need for further evaluation. I was referred to a Maternal-Fetal Medicine (MFM) specialist and was seen a month later at 29 weeks pregnant. They performed another anatomy scan and confirmed that Ozzy had a moderate-sized CPAM.

From that point on, I began weekly non-stress tests (NSTs) and ultrasounds. My MFM doctor was comfortable with me delivering at the same hospital where I had my other three children. The plan was for Ozzy to spend some time in the NICU for observation after birth.

At 35 weeks pregnant, we met with a pediatric surgeon who reassured us that 99.9% of babies with CPAM do well after delivery. The plan was to remove the mass when Ozzy was 6 to 8 months old.

But just two days later, our world changed forever.

During my routine weekly appointment, the doctor mentioned they thought they saw bowel loops in Ozzy's chest, which meant he could have CDH. I immediately started crying because I knew exactly what CDH was and how critical these babies can be.

The doctor informed me that all of my care would need to be transferred to OU Children's. They quickly brought me in for further evaluation and confirmed that Ozzy had a left-sided congenital diaphragmatic hernia (CDH).

We were devastated and terrified. Knowing how serious this diagnosis could be, I remember telling my mom that I didn't know what I would do if I lost him. Then I reminded myself that God was in control and would take care of Ozzy.

My amniotic fluid levels were elevated, and I had been experiencing contractions for weeks. On September 9, 2025, just five days after his CDH diagnosis, Ozzy was born at 36 weeks.

He was immediately intubated and taken to the NICU. Doctors determined he had a left-sided Type B defect. Two days later, on September 11, 2025, Ozzy underwent his CDH repair at just 2 days old.

His surgeon initially attempted a thoracoscopic repair but ultimately had to convert to an open procedure and place a patch. Thankfully, Ozzy did very well both during and after surgery. His chest tube and breathing tube were removed when he was 8 days old, and he continued to make steady progress.

At 26 days old, Ozzy was discharged home from the NICU.

The very next day, however, he began vomiting bright yellow fluid. We rushed him to the emergency room, where X-rays revealed a small bowel obstruction. He was admitted to the hospital for several days so doctors could help him pass the obstruction. Thankfully, he recovered and was discharged again at 1 month old.

When Ozzy was nearly 2 months old, he had his first follow-up appointment with his surgeon. New X-rays showed that his CDH repair looked great, and his surgeon told us he wouldn't need to see him again for another six months.

But just two days later, Ozzy woke up screaming in the middle of the night and was clearly in pain. I quickly removed his clothes and diaper and immediately noticed that his right testicle was severely swollen. We rushed back to the emergency room.

Doctors discovered that he had an inguinal hernia that was cutting off blood flow to his right testicle. He required emergency surgery. Once again, Ozzy handled everything like a champion. He recovered well and was discharged just two days later.

Today, Ozzy is doing wonderfully. We are incredibly grateful to the doctors, respiratory therapists, nurses, and everyone who cared for him throughout his journey. Their expertise, compassion, and dedication helped save our son's life, and we will never be able to thank them enough.