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  • Writer's pictureBeth Wankiewicz

The Baby Loss Hub - Luca's Story - CDH (Congenital Diaphragmatic Hernia)

After 3 years, and 3 early miscarriages, we got pregnant and finally passed the scary 1st trimester. We were feeling safe and confident until we got devastating news on the week 17 ultrasound.

Eran, my husband, wasn’t able to come to appointments with me due to COVID restrictions so he would wait outside. My loving husband waited outside in the New York winter during all my prenatal appointments except this one. I started to get nervous, “We’ll get the doctor to talk to you”, the technician said, and I felt a knot in the pit of my stomach. The doctor came in and started looking at the screen. “What’s going on?” I asked. And then my mind went blank, the only thing I remember from that response were siloed words that will haunt me forever. “CDH”, “severe”,”50%”. I asked him to stop talking so I could call my husband. I put the speaker on and told Eran something was wrong with the baby and that I needed him to listen to what the doctor was saying.

Luca had Congenital Diaphragmatic Hernia, a severe, life threatening defect that happens to 1 in 2500 babies, with a survival rate of 50%. And he had the worst one, right-sided CDH.

The doctor kept talking and I could barely hold myself together. “I’m going to schedule an amniocentesis to check for chromosomal abnormalities”, he said, and I just stared at him. I couldn’t process anything that was going on. Was this real or a dream? Had I just been told my unborn child had a severe, deadly condition and he might not live after being born? Was I just told I might have to terminate my pregnancy? The one baby that actually made it this far?

What is CDH? When the diaphragm doesn’t fully develop, it leaves a hole that causes the stomach, liver or other organs to move up to the chest cavity compressing the lungs and heart. Luca had the liver up, his right lung was not developing normally and his left lung was also underdeveloped due to lack of space.

How does CDH affect babies? They need surgery once they’re born because they can’t breathe outside the uterus. They require breathing support to stabilize them enough for the surgery that moves the organs down and patches the hole. After this, they spend months in the NICU as they become stable enough to breathe on their own, eat on their own, and get through any other complications. All this if they survive.

How common is CDH? According to, in the U.S alone:

  • 1 in 2500 babies is diagnosed with CDH.

  • Over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR.

  • With a 50% survival rate, 800 of those babies will die.

  • Today, and every day, at least 4 families will be devastated with the news of CDH.

We spent the worst two weeks of our lives, deciding if we terminated or continued our pregnancy. 50% were the chances. How do you terminate the one baby that made it this far? After three miscarriages, I couldn’t bear to be the one who would end this one. What if he is in the good 50%? We went into a research frenzy, spoke to specialists, and other CDH parents. The amnio and genetic results came out good. There was nothing else wrong. Only this horrible CDH. So we decided to give Luca the chance to fight, to live.

“Till there was you” was the song I sang to Luca when I found out I was pregnant. He was still tiny, but I wanted to sing to him so he’d know how much I loved him already. It became his song. It’s a song about never hearing bells ringing or love singing until that person came along. It’s as if this song was for Luca, because this is what he made us feel. Me, Eran, our families, friends and anyone who knew about him. His fight and existence was the biggest act of love and we were all touched by it like nothing before.

Luca was born on June 18th, 2021, via c section. It was the most magical day of my life. Eran and I cried tears of joy and felt an indescribable love bursting in our hearts. Luca was put on an oscillator to help him breathe. He was taken to the NICU, and that first night, the doctors came up to our room to tell us he needed to be put on ECMO. Although ECMO can save a baby’s life, it's risky. The longer the baby is on ECMO, the more chances they can develop a brain hemorrhage.

Luca was described by our doctors as “critically stable”, but when you looked at him, he didn’t look sick. He looked healthy, with chunky legs, and rosie skin. He was perfect. Days went by and his right lung didn’t expand enough. They did a trial run to see if his oxygen levels were stable enough to wean him off ECMO. He got to the last test, but his numbers were barely at the minimum. He then developed a small, but contained brain bleed that the doctors started to monitor.

On day 12, his belly was very bloated. He needed surgery to see if he had a perforated stomach. We were scared to death. We told Luca we were proud of him for being so brave, kissed him, and said goodbye with the fear of it being our last time we saw him alive. A few hours later, the doctor came out and gave us a thumbs up. Our souls came back into our bodies. He had a pneumothorax, and needed a chest tube to remove the excess air. He got through it.

The doctor said she had seen his right lung, and wanted to do his hernia repair, but it was going to be too much. He was also getting through a bacterial infection they had found a few days before. Our little fighter was beating so many obstacles. Later that day, after the brain ultrasound, we were taken to a conference room and the doctors explained that Luca’s bleed had become a haemorrhage. Luca’s battle had come to an end.

“Te amo, mi Luca. Mi Luca, te mo. Te amo, dice mamá”. Luca passed away in my arms, skin to skin, him finally feeling the warmth of his mama, me finally feeling him on my skin. Although he had 3 songs that were his recurrent lullabies, this was what I repeated over and over again in a made up melody for the last 40 minutes of his life on this earth. I kissed him, smelled him, touched his little nose, his hands, his feet. I told my 2 week old perfect baby that it was ok for him to go, and that he go, in peace. It was the hardest thing I’ve ever done in my life and yet the biggest act of love I’ve ever experienced. He fought to live 14 days to meet us..

Nothing, not even an in utero diagnosis will prepare you for the death of your baby. It’s still very recent since Luca left this world. So I’m still learning how to go on in this new life. What has helped me so far?

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Feb 10, 2022

I'm so proud of the Luca's brave those 14 days. I'm so proud of the way Meli have been healing this because I'm learning a lot from her. Luca is me little friend in the clouds who plays with de colors of the sky 😍✨

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