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Luca

Jun 14 2018
Photo by
Loren Elliott/The Players' Tribune
Photo by
Loren Elliott/The Players' Tribune
A.J. DeLaGarza
Houston Dynamo
Jun 14 2018
I

’m not gonna lie … I was definitely hoping for a boy.

I know it’s not right, and that I probably shouldn’t admit it. But I mean, come on, I’m a professional soccer player. I’d be lying if I said I hadn’t been wishing for a son from the moment my wife, Megan, and I found out that she was pregnant with our first child back in January of 2014. I imagined what it would be like to have someone follow in my footsteps, and immediately started thinking about teaching our boy why they call soccer “the beautiful game.” Right away, like within minutes after we’d found out Megan was pregnant, I was having these visions in my head of our son playing professionally, and me, old and gray, up in the stands cheering him on.

Of course, at that point we didn’t know if the he I was seeing in my mind was going to be a she instead, and it felt like it would be an eternity before we’d be able to know for sure. During those first 16 or 17 weeks, the anticipation just kept building and building. We wanted to spoil the baby in every way possible … but we didn’t know if we should be buying pink or blue.

We couldn’t handle it. We were going crazy. We had to know. So….

We took matters into our own hands.

Courtesy of A.J. DeLaGarza

Like a week or so before we were all set up to meet with our doctor for the 20-week ultrasound, we went to this elective ultrasound place where you can get 3-D and 4-D images, along with videos that you just may not typically be able to get from your doctor. We plopped down our $100, and got the news, and then….

We went on a shopping spree for our baby boy.

We weren’t messing around, either. We wanted to celebrate … finally. So we went to all the different baby stores in L.A. and hit up every boys’ section they had. His first outfits were a soccer starter set and an Oakland Raiders onesie.

It was all so much fun at the time, but looking back on it, I guess we didn’t fully think things through because when the actual ultrasound appointment with our doctor rolled around we were kind of stuck. We weren’t sure exactly how to play it, but we didn’t want to tell her that we had jumped ahead, so we actually ended up just … pretending like we didn’t already know it was going to be a boy.

It was a little weird, for sure. But at the same time it was cool, because Megan and I were completely happy. We were on top of the world when the doctor confirmed that, “Oh yeah … it’s definitely a boy.”

The room filled with laughter at that point. Pure joy. But it didn’t last long.

During those doctor visits, they also do routine measurements to make sure the baby is growing at the expected rates. At one point during the testing, it felt as if our doctor was lingering on a particular area far longer than others, and she stopped giving us any readings. Her smiles changed to half smiles. Her demeanor completely changed. Suddenly, she didn’t seem quite as happy as us.

All the while, my wife and I just kind of sat there gripping each other’s hands, looking at one another with these “What is going on here?” looks.

After what seemed like forever, our doctor said she wanted to speak with us back in her office, where we could sit and discuss the readings she was seeing.

At that point, even the half smile was gone.

It was just like, “We need to talk.”


When we got ourselves together and made it over to her office, our doctor proceeded to tell us that there may be a problem with our baby’s heart.

She wanted us to go for further examinations with a specialist and said we needed to get an echocardiogram that would allow the doctors to look more closely at the functions of our son’s heart. Beyond that, though, it was really tough to be sure of what was going on. She mentioned some problem with his blood flow, but everything seemed super technical, and our heads were pretty much spinning at that point. I mean, going in, we had just thought the appointment was simply to confirm the sex of our child, so we definitely weren’t expecting anything like what we heard.

We didn’t really know what to do or think. We were distraught. And heartbroken … even though we didn’t even really know exactly why yet.

The doctor told us she wasn’t certain how severe the problem was, but that she thought our son could possibly have a congenital heart defect. And so we got an appointment to see someone at Children’s Hospital Los Angeles….

In a week.

Seven whole days.

Let me tell you: That’s a long time to go between being told that the child you’re expecting may have a serious heart condition and being able to get more information about what’s going on.

And, of course, the first thing we did after getting home from the ultrasound appointment was Google everything under the sun.

Courtesy of A.J. DeLaGarza

We knew it was probably a bad idea, but it’s so hard when you’re in that position. It’s almost impossible to resist the temptation to learn something — anything! — about what might be wrong. So we went online, and we read all about congenital heart defects, and how they affect one out of every 100 newborn babies … and then we did our best to tell each other that our boy was going to be fine.

When our appointment at CHLA finally came around, the specialist there was able to bring some certainty to everything.

And it wasn’t good.

He diagnosed our son with hypoplastic left heart syndrome, something neither Megan or I had come across in our extensive Google searches. Basically, the left side of our son’s heart was underdeveloped and wasn’t allowing for normal blood flow to his body. The doctor told us there weren’t many kids who have had HLHS who are still alive today, and he wanted to talk with us about next steps. But before he went any further he apologized and said he needed to ask us a difficult question. He told us he would only ask it one time.

“Do you want to terminate this pregnancy?”

Wow.

Our hearts sank. We did not see that one coming.

At that point everything was just hitting us all at once. And when we said no, that we weren’t looking to go in that direction, the doctor told us what would need to happen after our child was born.

There would have to be an immediate open-heart surgery after Megan delivered the baby, and then three additional, staged open-heart surgeries — the first at a week old, the second coming about six months after that, and the last surgery, if our son was lucky enough to make it that far, would be at three years old.

It was a lot.

And those surgeries wouldn’t be a fix, either. They’d help to address issues with our son’s blood flow, but he’d still only have half a heart.

The specialist went on with his details, just giving us bad news on top of bad news. And that’s when he said that our son, who we had already decided to name Luca, would probably never be able to play soccer.

That was tough to hear for sure, but it was obviously the least of our worries. And, plus, I didn’t even believe it was true. I honestly had complete faith that our boy was going to be O.K. I mean, at one point I was just a skinny little kid from Bryans Road, Maryland, and somehow I ended up being drafted to play professional soccer for a living alongside David Beckham and Landon Donovan. I knew all about beating the odds. I had proven so many people wrong to get to where I was in my life, and I just knew that Luca was going to do the same.

In the weeks that followed, we discussed the possibility of attempting a surgery prior to delivery, but the risk to both Luca and Megan during the operation was just far too high. So all we could really do was let our son’s heart develop as much as it could.

And pray.

Loren Elliott/The Players' Tribune

After getting the news about Luca’s heart, my wife started a blog to keep our friends and family informed about what was going on. But the truth was that it was for us, too. Just to kind of help us cope with everything. She created the hashtag #LucaKnowsHeart and that slogan immediately felt right.

The blog allowed us to connect with other families that had gone through what we were going through. They were able to share real-life stories about their children. And it did give us some comfort knowing that there were support systems out there — that people were sending love our way.

My wife definitely used the blog to help her cope. But for me soccer is what helped me deal with everything that was going on. My time on the pitch, and the support I received from my teammates, and throughout the league … that’s what helped me fight through. Soccer became a getaway for me, a place where I could go and, at least for a couple of hours, escape from all the fears I had about our son. I would use up all the other hours of the day worrying about him, but while I was around the team and playing soccer, I felt as if that was the only part of my day I had control of. And my teammates were always there to do whatever they could to help pick me up — especially right before Megan gave birth.

Because Luca would need surgery immediately after delivery, the doctors scheduled a C-section, and it just so happened that the day before our son’s birth date, we had a home game against D.C. United, the team I grew up rooting for as a kid.

For that game my teammates wanted to recognize Luca and our story by wearing warmup shirts that had the hashtag my wife had created. And the support didn’t stop there. The same day Luca was diagnosed with a heart defect, I went and got a tattoo of a heart and cross on my wrist, to remind myself to just keep faith. During the game, I wore that design on a shirt under my jersey, and a few of my teammates did the same.

LA Galaxy

We won that game 4–1 , and each time one of my teammates scored they’d run over to me and lift their jersey up over their head to display that heart with the cross inside.

It meant the world to me — more than words can say or do justice to. It was such an emotional night, and it was one of the best experiences I’ve ever had on a soccer field. In a lot of ways, I almost didn’t want it to end, because the love that the fans and my teammates showed us was beyond special.

But as I walked off the pitch after that final whistle, I knew full well that the time for games was over.


I stayed positive the whole time.

Honestly.

By the time the big day arrived, I had actually convinced myself that Luca was going to come out and have absolutely nothing wrong with him.

I know that probably sounds super naive.

I mean, the doctors had pretty much told us what to expect and how long the recovery process would be, but in my mind I was like, He’s going to be perfectly fine when he gets here.

That’s just where my head was. I believed.

But, you know, as soon as he was born, our son was rushed over to this little incubator and the nurses started shoving tubes up his nose and needles in his hands so they could monitor and control his breathing.

Less than five minutes after he arrived, Luca was already turning purple.

It was clear — to me and to everyone else in that delivery room — that he actually wasn’t “perfectly fine.” He was in bad shape, and it was getting worse by the second.

Courtesy of A.J. DeLaGarza

They don’t do deliveries at Children’s Hospital Los Angeles, so Megan gave birth at the hospital directly across the street. Before I could really even catch my breath and realize that I had just become a father, Luca was being wheeled into an ambulance that would take him over to CHLA for his first surgery.

I made the trip with him — his skin turning darker and darker shades of purple with each passing minute. My wife, though, had to stay behind. She was told that she’d need to remain at the hospital to recover from her C-section for three or four days. She only got to see Luca for two seconds — literally like … one … two — as they rolled him past her to the ambulance.

When Luca came out of his first open-heart surgery at CHLA, just a couple of hours after being born, I remember I stood over him to block the light from his eyes. I started to talk to him, and I told him that I loved him, and, slowly, he opened his eyes.

I wanted more than anything to help him, and to do anything I could to give him some comfort. So that first night I decided to sleep in his room. I didn’t want to leave his side. I was afraid to, in all honesty.

And believe me, there was no sleep for me that night.

All I did was close my eyes, pray that somehow everything would be fine, and listen to all the machines in the room beeping and buzzing and clanking while the nurses entered every few minutes to check on our son.

Loren Elliott/The Players' Tribune

My wife had forgotten a couple of things at home, so the next morning I went back to grab them from the house. As I was returning to the hospital, I got a call from Megan’s mom.

“She needs you RIGHT NOW. Please hurry and get back.”

You could hear Megan crying in the background. Everything was starting to catch up to her at that point. She needed more than two seconds with her son, as any mother would.

When I got back to the hospital, I checked in with her and told her I’d run over to CHLA and FaceTime her right away so she could see Luca and tell him she loved him. But when I got over to Luca’s floor, I hit the intercom buzzer to get into the cardiothoracic ICU, and….

Nothing.

I buzzed again.

NOTHING.

Then I go to buzz a third time, and, as I do, I look through the little window cutout in the door and see all these nurses running down the hallway.

So I just let myself in, and as I’m walking to our son’s room, in my head I’m like, They were running in the direction of where Luca’s being kept. No way they were running to his room. That couldn’t be what was going on. There’s no way.

A few steps later, I turned the corner and….

It was Luca they were all running to.


Before that afternoon, I had thought “We need to talk” would probably be the worst, most heartbreaking thing I’d ever hear from a doctor.

I was wrong.

As I got into the doorway of Luca’s room, there were upwards of 10 to 15 nurses, doctors and surgeons crammed in there — so many people that my father-in-law was pinned up against the window, standing on a couch-bed. I was told that our son had gone into cardiac arrest — he “coded” is I think how they put it — and required an emergency surgery that was going to happen right there in that room to save his life.

A few moments later, when my dad, my father-in-law and I went over to a waiting room on Luca’s floor, a doctor came in and told me….

“Your son is the sickest child in the entire hospital.”

I mean, those were his exact words.

“The sickest child in the entire hospital.”

That’s so much worse than “We have to talk.” It’s not even close.

All three of us broke down and cried when we heard those words.

And while all that was going on, my wife had been calling and calling because I had promised her that I was going to FaceTime her with Luca as soon as I got to his room. It must have been agonizing.

When she couldn’t reach me, she tried my dad, and he picked up the call.

Megan knew immediately that something was wrong, and she kept asking him what was happening. My dad basically just told her that we’d come back over to her room in a few minutes and explain everything then.

Courtesy of A.J. DeLaGarza

As soon as I stepped out of the elevator on Megan’s floor at the hospital, I could hear her screaming.

Clear as day.

It sounded like something out of a horror movie.

“Is he dead? Did he die? Luuuuuca! Is he dead?”

Just those words over and over again.

She was assuming the worst at that point, so she was actually a little relieved to hear that Luca was still alive. It was only 28 hours after she had given birth, and she wasn’t in any sort of shape to get released, but she said that had to see her baby boy while he was still breathing. And we didn’t know how much time we had left. So we got her discharged as fast as humanly possible, and the nurses were actually still yanking IVs out of her arms while I was wheeling her to the elevator.

When we got to Luca’s room, Megan immediately rushed over to our boy. And I’ll always remember her singing the words to “Jesus Loves Me” to him. She just kept singing that to him again and again, and when he heard my wife’s voice.…

Luca opened up his eyes.

It was incredible.

I truly believe he knew right then that we were his parents — that he recognized our voices and realized that we loved him with all our hearts.

We didn’t want to share too many photos of Luca while he was in the hospital because for much of that time his chest was completely cut open and we just weren’t ready to put those images out into the world. But at one point I took a photo that I had to share. We were sitting around in his room and I put my finger in his hand, like just to let him know that I was there with him.

I didn’t really have any expectations. For the majority of the days he would just pretty much sleep, but when I gave him my hand that afternoon … he gripped onto my finger.

Courtesy of A.J. DeLaGarza

I’ll never forget that moment we shared.

I just had this really strong feeling that I was comforting him right then, and it was the first time I felt like a real father.

My son needed me, and I was there for him.


A week after Luca was born, and six days after coding and being put on a heart-lung bypass machine, we had to start discussing next steps. He needed to come off the machine because it was doing his body more harm than good, and the doctors told us that our boy was going to need a third surgery in seven days.

The nurses gave us a rundown of what was going to happen during the procedure and told us that we were to wait outside the room. One of the nurses said the surgery would take about an hour, and that if she came out at any time before an hour was up that it would be because things weren’t looking good….

Meaning our son was going to die.

Hearing that, Megan and I looked at one another with absolute sadness in our eyes. There wasn’t much we could say, but we did make one request.

We had never gotten the chance to hold Luca because he had to spend all of his time in the incubator hooked up on all his machines, and we wanted to be sure we’d get that chance. No matter what.

If they knew this was happening, we told them, that Luca wasn’t going to make it, then we wanted to get into the room and just hold him before he passed away.

We wanted to kiss him and tell him that we loved him, so we made the nurses promise to get us in there as soon as they knew for sure.

And 20 minutes in … the nurse opened the door and walked over to us.

Seeing her walk out of that room mid-operation, and knowing exactly what it meant was….

I don’t really know how to put it, actually. There aren’t any words that can describe what it’s like to find out that your child is going to die. There’s nothing I can write here, to be honest.

But they hurried us into where the operation was taking place as they were still trying to clean and unravel all the tubes and wires from around Luca’s body. We were able to hold and kiss him, and as soon as they put Luca into Megan’s arms she started singing “Jesus Loves Me,” just as she did the first time she arrived at his room a few days earlier.

He opened his eyes once again, and then, for the last time … he closed them.

Luca passed away on September, 4, 2014.

Courtesy of A.J. DeLaGarza

We stayed in that room and held our son for three or four hours after he passed away.

Then, when we finally were able to bring ourselves to leave, we had to somehow think about what we were going to do next … how we were going to move forward.

We had a room at our house that was all ready for Luca. A crib. Tons of clothes. Toys. Our dog, Diesel, was excited to greet his new buddy. Everything was all ready, and now all the dreams that had played out in our head were gone.

That was by far the saddest day of my entire life.

But it’s not the end of this story.

There’s a pretty special chapter remaining, and one that Luca definitely had something to do with.


Luca was laid to rest back in our home state of Maryland a week after he passed away. Soon after that, I was back on the pitch trying to start my own road to recovery. I can say for certain that 2014 was the worst year of my life off the field, but somehow it ended up being quite possibly my most accomplished on it. My teammates and I finished that season by hoisting a league-record fifth MLS Cup trophy.

A few months later, during the off-season, Megan and I started to really think about trying to have another child.

We were scared initially, of course. And after having been through so much, we were nervous about pretty much everything — doctor visits, buying clothes, or just about being happy that we were expecting again. But we both knew that we couldn’t let losing Luca convince us that having children wasn’t ever going to be in the cards for us.

We knew we were strong, and loved each other no matter what happened, and that we had everything we needed to be wonderful parents if we were lucky enough to get a second chance.

Courtesy of A.J. DeLaGarza

Megan got pregnant again five months after Luca passed away.

This time around it would be a girl, and everything checked out fine from the start.

We’re both convinced that Luca made that so — that he made sure everything would be O.K. for our family going forward. And on October 22, 2015, Megan gave birth to Luca’s little sister, Noelle.

Seven pounds, 10 ounces, and as healthy as can be.

Maybe for some people having a healthy child is kind of par for the course, but to me that was a miracle right there.

Noelle is a living breathing miracle, and I truly believe that she’s here with us today — and thriving and running all over the place and having a blast and just being a kid — because of Luca.

Her big brother.

And if you have any doubt about that….

While I was holding Noelle for the very first time, I turned and asked one of the nurses what the time of birth was — like the official time, so I could write it down and we could have it for one of our scrapbooks.

It was 8:28.

Luca’s birthday was 8/28.

Miracle.

Noelle was scheduled for a seven o’clock delivery, but Luca wanted us to know he was right there with us to welcome Noelle into the world. So she arrived at a time that could not be more special to Megan and me.

We feel like Luca sent her to us, and we definitely believe that he is protecting her and watching over her at all times.

Noelle knows about Luca, too, and she loves him just as much as we do. From the photos of him on our walls at our house to the screen saver on my phone, whenever she sees him she always shouts his name.

“Luca! Luca! Luca!”

As she gets older, we’ll tell her all about him, and about how brave he was. And you better believe I’m going to relive that finger-holding moment with her in glorious detail.

I have a hunch that he’s not only going to be her guardian angel, but her hero, too. And that when she’s in school, Noelle’s going to be doing projects on him and helping to educate her friends about congenital heart defects.

Noelle and Luca will always be connected in so many ways.


Every now and then, Megan and I pull out the scrapbook that we made when she was pregnant with Luca.

We look at all the early ultrasound images we paid for back then, and the photos of little outfits, and the pictures of him from the hospital and we….

Can be thankful.

We are truly thankful for the time we were able to share with him.

And now, a few years after his passing, we’re mainly doing whatever we can to try and keep his name and memory alive. If you go on social media and type in the hashtag #LucaKnowsHeart, you’ll be able to see all the love we have gotten, and all the awareness we have raised for CHD in Luca’s memory.

To this day, people still ask us all the time if they should even mention Luca’s name around us.

Every single time our answer is the same:

Please bring him up as much as you want. As much as you can, actually.

We love talking about our son. And that’s never ever going to change.

Loren Elliott/The Players' Tribune

For me personally, Luca continues to inspire me every day.

As I write this, I am six months post-op from a complete ACL tear in my left knee. For any professional athlete, missing time playing the game you love is probably the feeling you dread most. Lots of athletes who have gone through similar injuries say it was the worst thing to happen to them in their entire life.

Luca has blessed me with a different perspective.

I got a very kind message the other day from a fan that said: “Looking forward to seeing you back on the pitch and hope you’ve had good mental health through this injury.”

“Don’t worry about that,” I told him. “I’ve been through far worse in my life.”

I truly treat every single day as a blessing now, and when I’m on the field I am playing for Luca — because he never got to play the game himself. He wasn’t able to experience that feeling, so I’m enjoying every moment on the field to the fullest with him in mind. On the rare occasion when I have complained during my ACL rehab, all I need to do is look down at my wrist and see that tattoo I got for him.

I think of how hard he fought, and that keeps me pushing on.

As for our family, we have been uprooted from Los Angeles and landed in Texas, where I am in my second season with the Houston Dynamo. It was time for a change for our family, and we couldn’t be happier in the heart of Texas.

Megan is doing great. She still keeps in touch with a lot of her friends from L.A., and especially the “heart moms” she met during and after her pregnancy with Luca. She takes the absolute best care of Noelle. I am so proud to see the mother she has become.

And as for Noelle….

Loren Elliott/The Players' Tribune

She’s happy, and healthy, and enjoying life like any other two-year-old.

After Dynamo home games, when she is allowed to run and play on the field, we can’t help but think of Luca — and that his spirit is there inside her, laughing and having fun and running free right along with Noelle.

That makes us smile.

Luca’s more than just a memory now. He lives on through our daughter. We know that each and every time we tell Noelle we love her, Luca is hearing it … and that he knows we’re saying it to him, too.

And we all know, beyond a shadow of a doubt, that he loves us right back.

A.J. DeLaGarza
Houston Dynamo