Beyond Heart Failure at 2 Months Old: Crew's Journey

We first noticed something was wrong on Friday morning, March 14. There had been a few small flags earlier in the week. On Wednesday morning, Crew threw up during his morning feed and again on Thursday morning. But other than that, he was acting perfectly fine: happy, nursing well, just his usual self. 

What changed from that point? 

Starting around midnight going into Friday morning, Crew began forcefully throwing up after every feed, but again would be fine, happy and not fussy afterwards. By Friday afternoon, I knew something was wrong. His overall coloring was off, his skin had taken on this orangey-grey tint, and when he threw up again after his 2 pm feed, I knew we had to take him in.

We were visiting my grandmother at the time, about an hour from home. His pediatrician didn’t have an appointment available until the next day, but I had a gut feeling we couldn’t wait. I asked if he could be seen at their Southbury office instead of Waterbury, and we rushed home to get him there.

Once we arrived, the pediatrician told us we should go to Connecticut Children’s because of his coloring and persistent vomiting. They suspected it could be a small blockage in his stomach preventing him from keeping feeds down.

Once we got to the hospital, everything changed in the blink of an eye.
 

Things went from bad to worse very quickly.

When we first got to the emergency department, they were trying to take his heart rate and were questioning the reading. The look of panic and concern washed over their faces along with silence. They rushed Crew, still strapped in his car seat, to the room where everything escalated within minutes. By the time we got Crew out of the car seat and on the bed, 15+ people were surrounding him, frantically trying to get IV’s into his arms or legs, which was difficult with his tiny veins. Everyone was silently rushing and panicked, but we had no idea what was happening. Once the IV was in, they all started counting down to quickly inject the medication and everyone stopped to watch the monitor in horror. We had no idea what we were looking at or looking for.

Now we understand what was happening, but at the time none of us had any medical experience. I personally had zero medical awareness. When I saw Crew’s heart rate was between 250 and 300, I knew that was bad—but I didn’t know how bad.

Now that we understand the severity, it’s clear how critical things were. But in that moment, we were clueless. I remember my mom asking: “Is this now an emergency situation?” We had no idea what was going on. No one was saying much, understandably, as their attention was focused on Crew.

Fast forward to being admitted and brought into the PICU. 

Again, we were still very confused. The team was explaining what they could, but even they didn’t fully understand yet what was going on or why Crew’s heart rate wouldn’t come down. After several failed IV attempts and multiple medications to try and control his heart rate, we finally asked, “What are we looking for? What’s the severity of what’s happening?”

I’ll never forget the answer: “We’re looking for heart failure.”

It was hard to process anything after that. We just sat there, next to Crew, our perfectly happy, seemingly healthy baby, now strapped to a hospital bed, surrounded by wires, monitors, and machines that were alarming, confused and terrified.

Saturday and Sunday were the hardest days. In many ways, they’re still a blur.

On Saturday, the team was relieved when his heart rate finally stabilized, but his other vital signs were poor and declining. Dr. Sanders explained that he would need a breathing tube and that they were very likely expecting Crew to go into cardiac arrest, to which we were asked to sign the ECMO paperwork. At the time, we had no idea what ECMO really meant, or how serious it was. 

“Is this life support??” Dr. Sanders sadly replied “yes.” My family rushed to the hospital to be with us. The breathing tube went in and Crew did great, his heart rate was at a comfortable level, and he was now breathing easier and no longer struggling. 

However, Crew’s body had already been fighting enough and couldn’t keep up anymore. My mom was in the room when Crew unexpectedly went into cardiac arrest. 

Eric and I were resting in the sleep room when we were woken up by an announcement over the speakers: “Code Blue… Room 305.”
Our room. 

I didn’t have to have experience in the medical field to know what that meant. The next few minutes and hours were indescribable, something that I don’t wish on any parent, grandparent, or aunt, like we were all there to go through. There aren’t really words for what happened during that time. Our hearts were broken and shattered and we didn’t understand how this could happen. Dr. Sanders had to deliver the news that Crew was still in cardiac arrest and that they were starting him on ECMO. She showed gentleness and kindness in the purest form. This wasn’t just routine practice for her and the team, her emotions were just as raw as ours. 

The entire care team took their time to explain to us what to expect next and how to prepare ourselves once we saw Crew now strapped to all of these scary machines. They were sensitive, compassionate and loving towards us.
 

When Crew was on ECMO, we were in shock. We were just going through the motions. You unknowingly enter fight-or-flight mode. Looking back, we honestly don’t know how we got through it, but somehow, we did.

During those days, my husband and I took 2-hour shifts to sleep, which now feels unimaginable. But when you’re in it, nothing else matters except being at Crew’s side. Someone from my family, my mom, dad, or sisters were always by our side at the hospital as well.

How did the care team support you and Crew during that time?

The care team would constantly remind us that all of these machines were providing Crew’s body rest and the ability to recover. It was hard to look at our precious baby hooked up to more machines and IVs than I would have even thought possible. At times, we could barely walk around the once empty room because of how many machines were there keeping him alive.

I tried not to let my mind wander during the quiet moments, no matter how hard that was. Aside from that first Saturday and Sunday, we actually stayed relatively positive and encouraged that Crew was going to get better, even if we were always on the edge of our seats or silently holding our breaths. We believed he needed our positivity to heal, to feel us there beside him, pushing him to keep fighting.

Of course, there were moments of doubt, and the “rollercoaster of recovery” as the team would constantly remind us, was very hard to not lose hope. Every setback broke my heart all over again, as if it was the first time, but we pushed forward.

 

Besides leaning on each other as a family and praying endlessly (especially from the “army” of prayers from friends and family) we were deeply supported by Crew’s care team. The nurses, doctors, social workers, Sunflower Kids team and beyond were so gentle, delicate and sympathetic to us. Every ear was a listening ear.

They’d explain the severity, but they’d also focus on the tiny wins and any positive step, no matter how small. Somehow, they always knew what we needed to hear and how much of the details we could handle at the time. They didn’t sugarcoat things, but they also didn’t let the full weight of the danger crush us.

Every little win became a big one. That became our focus, one little thing at a time and the care team lead this mindset. It helped us process what was happening without being overwhelmed with fear.

We could list every single doctor and nurse that helped us, because they ALL stood out, truly. 

Dr. Sanders, Dr. Gupta, Dr. Shai, Dr. Campbell, Dr. Taylor, Dr. Golden, Dr. Silverman, Dr. Guardenier, Dr. Lorenzoni, Dr. Parekh, Dr. Salonia, Dr. Banasiak, Paige, John, Tara, Rachel, Sara, Bobbi, Christine, Allie, Kevi, Chris, Julia, Ebony, Sarah, Rachel, Brittany, Kate. We aren’t kidding when we say we are thankful for each and every person on Crew’s team and remember them vividly <3
 

Our first sense of relief came on Monday morning during rounds. Since we had only been there over the weekend, we hadn’t seen what a typical weekday round looked like, let alone the scale that would happen for Crew.

That morning, we counted more than 28 people standing outside of Crew’s hospital room, all intently listening, examining, thinking, and planning a course of action for his care. We were shocked, both by the fact that he was this sick and needed this much attention, and also in awe that this level of care was available for him.

That was the first day we met Dr. Gupta and many of the team members who would follow us through the rest of his journey. I’ll never forget being immediately drawn to Dr. Gupta, Dr. Silverman and Dr. Golden because they were the first ones who actively asked, “Why?” Why is this happening? Why does a two-month-old come in for vomiting and end up on ECMO with heart failure less than 24 hours later?

Up until that point, we had only been delivered bad news, one wave after another. But this meeting felt like the very first moment where we allowed ourselves to think: Maybe he will get better. Maybe the bad news will stop coming. Because now, we physically saw this extensive, caring, and deeply dedicated team ready to help.
Although Crew’s health was still very delicate and at risk, we started receiving good news after that Monday morning meeting. Each time a new concern came up or another part of his body became the immediate focus, something else would heal.

Little by little, each part of his body grew stronger, and the good news continued. Slowly, our tension began to ease. We trusted his care team. Every doctor and nurse were so compassionate, and our little fighter was clearly listening.

We did everything we could for Crew, even if it just meant talking to him, playing him music, or rubbing the only spot on his foot or hand where there wasn’t an IV.
On Wednesday, he came off ECMO and the CRRT machine. He was on his own and doing great! We were so impressed with his little heart getting stronger.

As relieved and overjoyed as we were, we knew we still had a huge hurdle ahead: the MRI. We had been told how long he was in cardiac arrest. We were told how serious that was. The team was gently preparing us for the kind of news no parent wants to hear: that he had been without oxygen for a long time and the MRI, most likely, would show lasting effects and/or damage.

After he went in for his MRI, we were tense. We were trying to be hopeful, while bracing for the bad news we knew would come.

When Dr. Gupta came back with the results, I was out of the room at the time. When I found out she was ready, I ran back to the room. She immediately started talking about his stomach: how the results looked great, how the earlier concerns were no longer concerns – again, for his stomach. But all I could think was but what about the brain? What were the BRAIN results? This must not be good if we are focusing on the stomach.

Finally came the words I had been waiting for: his brain MRI was normal. His brain looked good. He would be a happy, normal baby and that there was no damage seen. 

I was speechless. I was shocked. I didn’t move. I don’t think I even breathed. The only word I could manage was, “Really?” followed by tears and the biggest hug for our superhero doctor. Little did I know, she had already told my husband and family in the room and was purposefully explaining the stomach results first and holding onto the brain results last to build my overjoyed reaction.

Most of Crew’s team came to visit us with happy tears and huge hugs, just as excited and amazed as we were. The love and pure joy that followed meant everything to us. Crew is a true miracle.

This didn’t feel like just a team treating a patient, it felt like family.

From that moment on, we were filled with nothing but hope. Our little Crew was a fighter. He was going to be okay.
 

Crew is as happy and smiley as ever, he truly is the happiest baby. He’s six months old now, with two tiny bottom teeth, eating solids, sitting up on his own, and starting to crawl! He’s doing amazing. He is hitting all milestones and moving forward, physically and metaphorically, as if nothing happened.

We’re in awe of how far he’s come and how well he’s doing. He takes medications throughout the day and night to help control his heart rhythms, and if it weren’t for those tiny reminders at medication time, you’d have no idea he went through everything he did at just two months old.

We’re speechless, amazed, and beyond grateful for God’s gift. It still doesn’t feel real.

Crew is now trying to keep up with his 3 and 13-year-old brothers. The bond and love they share melts our hearts every single day. The giggles are endless. Crew’s happiness is contagious and has let us all heal and move forward without any doubts or second-guessing if something bad will happen again. If Crew is happy and smiling, then so are we. Crew is a fighter, we will never question that and know that whatever happens next, he can handle it.
 

I wouldn’t wish our experience on anyone, but with the outcome we’ve seen and the recovery journey we’re on, it was all worth it.

I wouldn’t have wanted to be anywhere else but Connecticut Children’s. The care team not only knew what they were doing for our child, but also for us.

Looking back, we didn’t know all the information and scary details that they intentionally left out during those early days and we’re so grateful for that. It wasn’t until Crew was further along in his recovery that we were truly ready to hear the full picture: the in-depth explanations, the more serious medical statistics he was up against, and just how close things really were.

They explained everything in detail when we were emotionally ready for it and we’re so glad we weren’t given all of that upfront. It gave us space to stay hopeful, to focus on the small wins, and to support Crew without fearing what could have been. That made all the difference.
 

What does Connecticut Children’s mean to you and your family today?

We will forever be thankful to every single doctor, every single nurse, and hospital staff who took such tender and loving care to save our precious Crew. I can now confidently say that I have met true superheroes.

I will never forget the kindness and support they gave to us every single second of every day we were there; not only did they take care of Crew, but they genuinely took care of us too. They answered every single question and explained every single thing, no matter how many times we asked, always asking if we needed anything or how else they could help.

We have learned so much through them. Through all the scary, the nature of their care, and now, their friendship, was always comforting. We will forever be in debt to their team. Their compassion is unmeasurable. Dr. Golden said something very early on during the ECMO days and it stayed with us to this day: “Thank you for letting us take care of what’s most precious to you”. They treated Crew as our baby, not just a patient.