‘It’s time to let go.’ They wrapped him in his Superman blanket. Daddy held his little boy, for the last time.’: Couple lose first child to extremely rare YARS2 disorder, ‘Every single day we miss his smell, his little personality’

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“I never expected I would be a mommy again. I already had three beautiful, healthy children from my previous marriage. After my divorce, I remember thinking, ‘Not only do I not want to be married again, but I definitely don’t want more kids.’

Courtesy of Lindsey Petrucci

That all changed the day this handsome, bearded Italian walked into my office to pay his rent. We hit it off instantly. Even though both of our hearts were guarded due to toxic past relationships, our chemistry together was something neither of us could ignore.

He had lost his mother from a blood clot in her heart at just two months old. At 11, he also lost his father from a major heart attack. We had both been through a lot in our lives, so connected on our losses and growing from them is one of the things that really brought us together.

We were engaged shortly after dating, four months to be exact. During this time, I was still thinking to myself, ‘This is crazy!’ So, we both decided it was best to wait a good year or two before getting married. We wanted to take the time to grow in our faith, as a family, and grow the love of our new life together.

Courtesy of Lindsey Petrucci

But just a few weeks after getting engaged, I found out I was pregnant. I was so nervous to tell him, but also excited because I knew the only thing he wanted in the world was to be a daddy.

The pregnancy was pretty uneventful. There were a few hiccups here and there, but no red flags or signs that anything was wrong with this miracle growing inside of me. I remember the first time I felt him kick. I was sitting in my office on a conference call when I felt a thump in my belly. It had been seven years since my last baby, but that kick, that little flutter of life, brought me back to the beginning again. It was the first time it really hit me that we were having a baby. I turned my phone on mute and cried.

Was it the pregnancy hormones? Probably. I am always a blubbering mess when I’m pregnant. As the weeks went by, and the kicks got stronger and stronger, the more excited everyone got to be welcoming this new human into the world.

Courtesy of Lindsey Petrucci

Nicolas ‘Nico’ Michael Petrucci was born on October 27th, 2016. The labor, like the pregnancy, was uneventful. I was induced at 39 weeks due to my history of extremely fast labors. After a few pushes, he was here! He was smaller than any of my other babies, weighing in at just 6lbs and a few ounces.

When he first arrived, he wasn’t breathing like he should be. All the doctors and nurses rushed into the room and brought him to the warming station. ‘Sometimes babies born quickly get a little shocked,’ my doctor reassured me. ‘It just takes them a second to come around.’

Sure enough, after a few minutes, he was crying away. The nurses bundled him up and placed him on my chest. All of my worries and fears that every pregnant mommy has just washed away. I was so in love. His daddy kissed my forehead with a look in his eyes I will never forget. I didn’t think I could love this man more, but when you see your husband look at his child for the first time it is inexplicable.

Courtesy of Lindsey Petrucci
Courtesy of Lindsey Petrucci

We left the hospital with our bundle of joy a mere 24 hours after delivery. I hate the hospital! It gives me extreme anxiety. I wanted my home, my kids, and my bed as soon as possible. I look back on those next few weeks now and think to myself, ‘How could I have missed so many warning signs?’ It is something I will live with the rest of my life.

We made it through Thanksgiving with the family and we made it through my 30th birthday. As Christmas approached, so did the events that would forever change our world. The first signs that started concerning me was the fact that he was not eating. If he did eat, he would throw everything up. Next came the sleeping, or lack thereof. He would sleep maybe 20 minutes a night. Then came the constant crying.

Around the holidays, I remember thinking, ‘He must have a cold. Or maybe he’s developing an ear infection.’ I called the pediatrician. ‘Your little guy has vaccinations tomorrow, so we can wait until then,’ she said. But, as every mother knows, when you think something is wrong with your baby, there is something wrong with your baby.

So, I loaded him up and took him to the immediate care right down the road. The minute the doctor walked in, he looked at my little boy and back up to me. ‘You need to go to the ER right now! I’m calling to tell them you’re on your way. Please call me and let me know what they say.’ My heart sank and I went into a daze.

ER? Why would I have to go to the ER? It’s just an ear infection. They say that love is blind. Looking back at old pictures of him I see now just how blind I was. He looked sick, but I just didn’t see it.

Courtesy of Lindsey Petrucci

I called his dad on the way to the ER. It was his first day back at work after Christmas break, so me being me, I said, ‘Don’t worry about leaving. I’m sure he’s fine.’ Of course, he left right away.

The minute I walked into the ER, they were waiting for us. The immediately got him into the room and did a spinal tap. Every mother’s worst nightmare. If you have ever experienced this, it is the hardest thing to watch. I remember the nurses telling me, ‘At least he is crying. It’s a good sign that he is crying.’ I thought to myself, ‘What are you talking about? This is absolutely horrible!’ I was naïve. Crying was, in fact, a good thing. Hearing a child cry is something I will never take for granted again.

The results came back and everyone in the ER was shocked. His hemoglobin level was at a 2. In non-medical terms, he would be dead within hours if we didn’t get him an immediate blood transfusion. But where was his blood going? That was the next problem to solve.

They did cat scans of his head to see if his brain was bleeding. Then, they did x-rays of his body, thinking it could be internal bleeding. Everything looked normal. After a few hours, they decided he needed to be transferred immediately to the children’s hospital. So, after his second blood transfusion, they loaded him up and we headed there.

Courtesy of Lindsey Petrucci

As we rode in the ambulance in Chicago rush-hour traffic, I couldn’t help but think, ‘An ear infection? How could I be so dumb? My little boy was dying before my eyes and I thought it was a cold?’ We got to the hospital and, from then on, it was a world of ‘we do not know.’ They could not figure out what was wrong with our sweet little boy. We had the best doctors in the nation coming to look at him, but not one of them could figure it out.

He had an enlarged heart, there was fluid around his heart, he could not replenish any blood he was given, and his white blood cell count was pretty much a zero. He went through test after test, blood transfusion after blood transfusion. ‘He should be getting better,’ they told me. But he kept getting worse.

Courtesy of Lindsey Petrucci

At one point, we moved from the PICU to just the general floor because he had stabilized his numbers for 2 days. Then, his oxygen levels started dropping fast. At 3 a.m. in the morning, we were woken up and rushed to the ICU for Heart Patients. That is where we stayed for weeks to come.

Within 48 hours of being on that floor, our boy’s heart stopped for the first time. It was the anniversary of my husband’s dad passing away. Our emotions were everywhere. I watched hundreds of nurses, doctors, teams run into that room. My husband had gone down to the first floor to grab us a late dinner. When he came back, I was in the hallway in tears. We waited, we prayed, we cried. That was all we could do. The amazing doctors brought him back, but he was now fully incubated.

Four weeks after the nurse in the ER had told us to be thankful for his cries, I finally understood what she meant. I remember just being so frustrated. His body was shutting down, and not one doctor knew why. They finally referred us to a genetic counselor. He explained that the tests would take weeks or months to get back. ‘We don’t have that kind of time,’ we said. So, he pulled some strings to get them processed faster than anyone thought possible.

We were on week 6 now, watching our incubated son in a medically induced coma. He was on so many medications and it seemed so unreal that a tiny little body could handle so much. He was such a fighter. The strongest baby I have ever known, and he was mine.

Courtesy of Lindsey Petrucci

The results came back, and it confused the doctors more than it gave them answers. He had a genetic, mitochondrial disorder called YARS2. He was also the first child ever in the United States to ever have this. He was the 11th in the world. There was absolutely no research on it. There were a few papers written by some doctor who studied a family that carried the same mutation, but they were from Liberia. The only thing that the doctors could tell us was this: ‘No one has survived this. This is a fatal disorder.’

You would think my husband and I would crumble, but we were hopeful. We had faith, and we prayed. We prayed hard. On February 10th, 2017 our prayers went into full force. We were always very open with our team of doctors. We told them, ‘Even though we have hope, we also don’t want to put our child through things his body cannot handle.’

Courtesy of Lindsey Petrucci

Then, suddenly, it happened. A doctor came into our room, and I could tell by the look in her eyes that this was it, we were going to have the talk. ‘His heart was getting very weak and fluid was building around it,’ she said. ‘His organs are shutting down. The time is now to make some decisions.’ We all cried.

I remember her holding my hand, crying with me. ‘If his heart stops again, it’s time to let him go,’ I said. She hugged us as hard as ever. That night, my husband and I went to bed, still hopeful. ‘He will pull through, he’s always pulled through.’ He was strong, the strongest baby.

My phone rang at 3:54 a.m. They never called at this time, only at shift changes for updates. My heart sank. I knew we had just lost our son. I handed the phone to my husband, I couldn’t answer it. The doctor explained that he passed and they couldn’t bring him back. We needed to get there as soon as possible. They were giving him breaths manually so we could come and say goodbye.

The walk there was silent. It was February in Chicago, so it was freezing. I remember just looking at my breaths while walking the same walk I had walked for the past few weeks a hundred times. We just held hands and prayed. When we got into his room, it reality hit us. My husband started to cry. I think I was more in shock. I ran out of the room and instantly felt sick. I couldn’t process what was going on.

They had taken all of his wires and his tubes out. He was no longer incubated anymore. There was just one nurse now and she was giving him air for his last breaths. It had been weeks since I was able to hold him.

They wrapped him up in his favorite blanket, and placed him in my arms. He was still warm, it was the first time in a very long time since I had seen his face without tape, monitors, and wires all over. He was still absolutely beautiful. I cried and kissed his cheeks. I told him how proud we were of him, how strong he was. I told him thank you for letting me be his mommy. I cuddled him like I did the first day he was born when the nurses placed him on my chest. I gave him one final kiss, and handed him to his daddy.

His daddy held his little boy, the one he had prayed so hard for, during his last breaths. We are both very comforted to know that he is in heaven with his parents. We knew they were waiting there, waiting to hold him. He was not alone.

The doctor came in, the one who had been with us most of this journey. She was sobbing. His nurses were all there, sobbing along with us. She made the call that he had officially passed. And just like that, our little boy was gone. Nico passed away at 5:15am on February 11th.

His funeral was held a week later. Hundreds of people showed up. The funeral home was trying their best to accommodate the mass of people. Nico’s nurses drove out two hours to attend. We called Nico our little superman. He was buried in a superman outfit with a cape and his superman socks. He was wrapped in his favorite blankie. Placed in his arm was his favorite superman doll that he had with him the entire hospital stay.

I remember a week or so after his funeral, I was talking to a very close family friend. I was angry. I remember saying, ‘How could God take away my sweet boy? How could he do that to his dad who had already lost so much? Why do bad things like this happen?’ She told me something I will never forget. ‘Heaven wouldn’t be heaven without the innocence of a child, the laughter of children, the cuddles of innocent babies. Could you imagine eternal paradise without those things? That is why God has to take children, to keep the innocence and love there.’

After that, the anger went away. We have tried our best to move on with our lives, but he is forever in our hearts. Every single day I think about him. Every single day I miss his smell, and his noises, and his little personality. He would be two and a half now. He would also be a big brother.

Courtesy of Lindsey Petrucci

We welcomed another beautiful boy in June of 2018.

Courtesy of Lindsey Petrucci

The doctors advised us to terminate him immediately, especially considering Nico’s rare genetic mutation. There was a 25% chance he would be healthy, but we refused. Our faith never faltered. We told them, ‘Even if he was sick like his big brother, his big brother was loved. He will be too.’ And, sure enough, he was born a healthy little boy.

Courtesy of Lindsey Petrucci

We like to think that Nico sent him to us. Not to replace him, but to heal our hearts from losing him. I am not the only parent in the world to lose a child and I will not be the last. So many of us know it is a pain that you would not wish on your own worst enemy. You never get over it, you just learn to live through it.

We still talk about Nico. His little brother has a photo book I put together of pictures of him. We go through it and I tell him stories.

Courtesy of Lindsey Petrucci

We have pictures of him up around the house, and every year on his birthday we throw a Nico Halloween Bash to remember him. I am proud of my husband and I. Something that could have so easily broken us, only made us stronger. We are forever Nico Warriors in this house, and we are so grateful that he chose us to be his mommy and daddy. Even though his time here was short, the impact he has made on so many people will forever make me the proudest mommy. Thank you Nico, for everything.”

Courtesy of Lindsey Petrucci

This story was submitted to Love What Matters by Lindsey Petrucci of Crystal Lake, Illinois. You can follow her journey on her blog here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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