Daniel’s CDH Story

My pregnancy was relatively smooth. Aside from nausea, I felt well. Ice water and gum were the only things that helped without medication. Everything seemed normal—until our 20-week anatomy scan, when we received the devastating news that our son had Congenital Diaphragmatic Hernia (CDH). The doctor who delivered the diagnosis was not the kindest. I immediately shut down, overwhelmed with anger and guilt, wondering how I had failed and what blame I would carry.

At 30 weeks, my water ruptured. Because I had polyhydramnios, I was able to keep my baby safe in the hospital for the next seven weeks. I wasn’t on strict bed rest, but I stayed in the same room, day after day, patiently waiting.

At 37 weeks, I was scheduled for induction—but my body decided it was time on its own. At 5:00 a.m., my usual “natural” alarm woke me. I was already 5 to 6 centimeters dilated. Off we went to Labor & Delivery. After three long yet incredibly rewarding hours of pushing, our sweet boy entered the world at 11:09 p.m.

Before delivery, I had made one special request—that my husband be allowed to cut the cord. Many families with a CDH baby are never given that opportunity, and I pleaded, “Please, it’s the least we could do.” They said yes. For a brief moment, I had a 7½-pound, perfect little white tushy on my chest. That moment marked the beginning of his journey.

A dozen NICU staff stood by, waiting as I pushed my final push. He was immediately intubated, stabilized, and taken to the NICU. As everything unfolded around me, I prayed out loud, asking our Lord to guide the hands of the medical team and protect our son. It was a prayer I had held onto for months.

When I was finally able to see him, there he was—our miracle rainbow baby. All I could do was pray for God to save my son from all that he was about to endure. The ECMO machine stood nearby. The irony was heavy—Daniel did not need it, but the baby across from him did. I felt relief and heartbreak all at once. It was “supposed” to be for him, yet God said no. Deep down, I believe that if Daniel had required ECMO, nothing good would have come from it. ECMO does save lives, but it also carries risks.

Daniel was diagnosed with moderate to severe left-sided CDH, and his journey was incredibly difficult. Through it all, I committed to providing my breast milk. I pumped constantly—far more than I ever imagined possible. I’m still amazed that I was able to meet his needs until he was 11 months old.

Daniel experienced multiple infections that required re-intubation more than once. During his last intubation, around three months of age, doctors confirmed that he had re-herniated and needed another surgery as soon as possible. He underwent his second repair, and at my request, received a G-tube. Yes—I requested it, because I knew he would need it. That decision allowed me to continue exclusively pumping while he was on TPN for about a month.

Just when it felt like we might finally be going home, another illness hit—parainfluenza. Daniel couldn’t come off high-flow oxygen, and once again, I felt defeated. What now? Why can’t he catch a break? It was terrifying. About a month later, he finally transitioned to regular oxygen, and we began hearing the word “Disney.” In that NICU, “Disney” meant home.

Daniel spent 198 days in the NICU. He came home on a low oxygen requirement and with his G-tube. Since then, he has successfully “graduated,” completing six months of occupational, physical, and feeding therapy. I am beyond proud of him. I take immense pride in saying he is my son.

At 18 months, Daniel began walking—and running—and, of course, collecting plenty of boo-boos along the way. He is now a two-year-old. He no longer has a G-tube and is completely off pulmonary hypertension medication—something I once wasn’t sure I would ever witness.

To every family receiving this diagnosis: never lose hope. Have faith. Speak up for your child or loved one in critical care, and never be afraid to say no. This was not the roller coaster I ever wanted to ride—I hate roller coasters—but this one was worth it.

Daniel’s life, like that of every CDH baby, carries uncertainty. We don’t know what the future holds. All I pray is that challenges stay away and that Daniel remains as strong as he has been so far.

Daniel Yarin
His name was chosen long before we knew his diagnosis.

Daniel — lions did not get him.
Yarin — he will sing joyfully.

Daniel will sing joyfully to our God for his life and his testimony.