Luca's story - The greatest act of love ❤️

After three miscarriages, we were having our little rainbow baby, Luca, and he had CDH.

Our baby boy Luca was born Friday, June 18th at 37 weeks + 2 days. He had right-sided CDH with liver up, and less than 1 LHR. His prenatal ultrasounds and MRIs were always good, his heart was strong and I had no complications during pregnancy except a short cervix and scheduled c section due to a prior myomectomy. We had been preparing since we got the diagnosis, on week 17. We had gone to CHOP, prepared our relocation to Philly, I took an early leave to just focus on Luca and prepare him for the battle he'd had to give against CDH. It was a magical pregnancy, I sang to him, meditated, did yoga, played the ukulele, read to him and talked to him since I felt his first kick. We had hope and faith that he'd survive and thrive.

Luca arrived on the day we had chosen, and immediately the doctors and nurses fell in love with him, he was beautiful. He was put on oscillator first, and that night they came up to my room to tell us he needed ECMO, the first fear came true. He was "critically stable" the nurse practitioner told us, and that's the term we'd hear for the next days. Luca was tracking stable on ECMO, until the second fear became real, they found a bleed in his head ultrasound, two days later they saw a second one. He needed a CT scan to confirm the severity, we felt alive after the results came out saying it wasn't in the brain, but in a constricted ventricule. After speaking to the neurologist he said the damages wouldn't be fatal, we'd look at potentially ADHD. We were happy to hear that, we'll take ADHD ten times.

Then things just went downhill from there, his tummy got swollen one night and they needed to do an urgent exploratory operation to see where the perforation was. After a successful surgery, the doctor found it was a pneumothorax, his stomach was safe and perfect, and the doctor told us she had even seen his right lung, I cried the biggest tears of happiness. She said she would have done the repair if Luca didn't have the infection. So close. We thought this was the last and worse hurdle our little Luca had to go through, but it wasn't.

The morning after his surgery, we knew things weren't right. The doctors came by saying they wanted to do another head ultrasound, 3-4 hours after the last one, and then we'd meet at noon. We knew then and there that meeting wasn't going to be good. The team of doctors were waiting for us in a conference room, and they gave us the news. Luca's bleed had extended a lot, now it wasn't only about how he'd survive but if he'd survive. My world crumbled as I heard and felt my heart break.

We held our perfect baby for hours, saying good bye before they disconnected him from ECMO. I sang his songs, I smelled him, kissed him. He was perfect. I held Luca after they disconnected him, I wanted him to be safe in my loving arms as he left this world. He'd already spent too much time alone in that NICU bed, he deserved to be in my arms, skin to skin as he passed. I held him for a while, until his heart stopped. Our little Luca was two weeks old.

We did everything perfect, we went above and beyond for our baby boy, Luca didn't even get swollen while on ECMO, his vitals were always good, yet, CDH gave him all the things we were warned about, and took him away. I find myself reading the letter to grieving parents over and over again to convince myself that there was nothing we didn't do for him, and that CDH doesn't play by the rules.

His story and purpose will live on, this is Luca's story:

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So grand and so perfect. Many need years, Luca transformed our lives in a short time.

Our perfect baby escaped from a cloud where all the babies that couldn’t continue lived. He was a naughty baby that said “I want to see my parents for a little while”, because he saw the love we had for him when we decided to continue the pregnancy, despite everything.

And we saw each other for the first time. He probably thought “Good escape Luca, you did it, you saw mama and papa”. He probably also thought “Sorry mama, I’ll make you suffer when I leave, but you’ll forgive me because I only wanted to see you both”.

“I only came down from my cloud to show you that you are the best parents. That lady with hair like rays of sunlight will be my mama and I want her to believe it when she sees me”.

It was him who decided it to be this way. He didn’t stay behind, he went even further. The biggest act of love, a magical mischief like a character from Disney (that’s what mothers do right? Forgive their children’s mischief).

We can cry because Luca is gone, but we can smile because we met him. We can close our eyes and pray for his return, but we will open them to see the love he left us. Our hearts feel empty because we think of him but at the same time our hearts never felt so full of love by his presence, all the faith in his fight and existence.

You did it well my precious, you did amazing Luca. You overflowed with love the hearts of all the family, united we surrendered to the most beautiful love, the most beautiful eyes.

When we were asked if we wanted to meet the perfect love we said yes, and we weren’t wrong, your mission was grand. The smallest of the family will be remembered as the greatest.

Luca, you will always be LOVE,
you will always be LIFE,
you will always be HOPE,
and you will always be LIGHT.
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