Sweet Baby Miles
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The Beginning of the Road
Paul and I found out we were expecting our second child in December 2022. We were so excited to grow our family and to give Barrett a baby brother. We decided on the name Miles Alexander. Miles meaning soldier and Alexander meaning warrior. The name seemed fitting as we knew he would be ready for this fight, and we would be there with him every step of the way.
During our 20-week anatomy scan, our tech spent a stressful amount of time on baby Miles' heart. I knew in my gut that something was off. After the scan, we were greeted by a doctor who told us, "We don't know exactly what is wrong with his heart, but the right side is very enlarged." We asked what this meant, but her demeanor told me more than her words; she was concerned, and I could feel it. The following weeks were filled with fetal echo appointments and hours of research about his diagnosis.
After our first fetal echocardiogram, we found out that Miles had a CHD called Ebstein's Anomaly. Ebstein’s Anomaly makes up less than 1% of CHD cases. We couldn't wrap our heads around the fact that if Miles made it to birth, he would be 1 in 200,000. His specific condition was moderate, but our doctors told us that it could change. Some people are lucky and do not realize they have it for a while, and others have a more challenging path ahead. Miles’ diagnosis did change and he ended up with severe tricuspid regurgitation.
We started to search for the best specialists, hospitals, and surgical options—anything to set Miles on the best possible path. Toward the end of my pregnancy, I had a call with a specialist who said, "His heart is extremely large; some babies with this will make it, and some will not." This doctor’s words would ring in my ears for months, and honestly, they still do.
Preparing for Miles’ birth was a complex process. An ongoing joke was that Miles needed to be born on a Monday morning, preferably around 9 a.m., so everyone he might need would be working. On my induction date, our room was filled with specialists ready to help Miles regardless of the condition he might arrive in. He might not breathe, they said. He might not cry, and they might need to rush him out of the room. Miles was born at 9:09 a.m. Talk about following directions. He came out crying and was able to spend about 15 minutes in our arms before taking his first ride through a hospital, Miles was off to the cardiac PICU.
Bumps in the Road
When Miles was two days old we were met with a dreaded bump in the road. The type that, despite near-constant warnings, we could never actually prepare for. The bumps we hoped and wished wouldn't show up and wouldn't be so big. But Miles' heart had its own plan. At two days old, Miles went into a SVT, an unexpected arrhythmia. His heart rate was relentless, hitting 305 at one point and sticking at 250 despite multiple rounds of medication and shocks to try and get him back into a safe rhythm. Paul and I stood there frozen, unable to walk away yet wishing we were not witnessing this trauma. Wishing Miles was not in this nightmare.
Miles took his first car ride at 4 days old. Not with us but with his new EMT friends who were supervising his ventilator on a 3-hour trip to UVA. Our family had come to a dangerous crossroads, one we would face every day of Miles’ life: How do we prioritize Miles and prioritize Barrett? How can we choose one son over another?
The 3-hour drive between the hospital and our home made this an impossible road to navigate. We built a schedule, trying to do the best we could. Thursday early mornings, we’d leave for UVA. Saturday late nights, we’d return to Virginia Beach. I was not prepared for the immense guilt you feel leaving one child for another, and it was relentless. But the bumps in the road were just getting started.
After arriving at UVA, things began to settle down for Miles in the NICU and we had every reason to believe he would have a smoother journey ahead. But our hopes were shattered over the course of the next four months, as Miles would hit every bump in the road—at high speed.
From blood clots to feeding issues, blood transfusions to oxygen support, Miles hit just about every heart baby milestone. He earned the reputation of a troublemaker, the one always leaving the cardiology team stressed and scratching their heads. It was funny sometimes, until it wasn’t.
These months were marked by huge potholes, a few of which nearly derailed Miles’ health and made us feel out of control and terrified. These were the 4 a.m. phone calls preparing us for emergent surgery. The calls to warn us of a possible need for ECMO—life support—the last resort to save his life.
Miles had countless heart catheter procedures and would recover each time. We would feel a sense of relief until we were jarred by the news that it was time for the next medical intervention.
On October 15, Miles’ team called us at 11 p.m. to tell us Miles would need emergent open heart surgery the following morning. We reached out to our family to watch Barrett and packed our bags. We were ready to take our 3-hour trip to UVA at 3 a.m. I remember walking him down to surgery wondering if I would see him again. I sobbed and was barely able to tell the nurse his name and birthday. Hours later we received the call that he was doing okay. We felt a rush of relief, Miles made it over a massive bump in the road. During surgery, they made some adjustments to how his heart would function and reduced the size of his right atrium in an attempt to lessen the workload for his heart. We now had a new glimmer of hope for a smoother road to take us to his next open-heart surgery, the Glenn.
Miles was recovering well and we moved from the PICU to a lower level of care. We joked while leaving the PICU, "We know Miles loves it here but we will see you in a few weeks for his Glenn!" It would be much sooner than that because there was a bump around the corner to make you question your hope. Less than 48 hours after our move, Miles returned to the cardiac PICU. His oxygen levels took a concerning dive and they wanted to keep an eye on him. He would bounce between the cardiac PICU and IMU a few times before his Glenn.
On December 4th, Miles had his first non-emergent surgery: the Glenn. Leading up to this surgery we always heard "the Glenn will be your ticket home!" Many babies are discharged within a week after the surgery. Our hopes were high, so we rushed to finish Miles' nursery and bought matching Christmas outfits for the boys. We were confident, we were calm, and even a little excited.
The night before surgery, Paul and I watched Miles smile as he heard our voices enter the room. We snuggled and held him as he napped. I spent time memorizing his fingers and toes. I watched him as he sucked on his hands while he slept. All of these things I was taking for granted and didn't even know.
His Glenn went well, but we soon began a bumpy recovery. Miles began to have episodes of pulmonary hypertension and his oxygen saturations would drop to alarmingly low levels. The PICU staff gave him all the medications they could. After a few long weeks, he began to turn a corner for the better. Finally, our hope was coming back to us that we would be heading home with Miles soon.
This hope would come crashing down in the blink of an eye. We were faced with one of our biggest fears: Miles was in cardiac arrest.
If we were experiencing bumps in the road, this one was a mountain.
The End of Our Road
On December 21, we watched Miles begin to code, and Paul and I knew we had to step away. We sat in the lounge until we saw a nurse walk toward us. I knew this was not a good sign. They had us enter a waiting room and we had chaplains visiting us—another worrisome sign.
We waited for what felt like a lifetime for someone to update us. The doctor entered and told us that Miles had gone into cardiac arrest, that they had performed compressions for 34 minutes, but it wasn’t enough. At that point, he was on ECMO. For the first time in my life, I felt completely hopeless, gutted, and terrified. As soon as we were able to, we went back to look at our sweet baby. I looked at him in awe as I watched the tubes of blood attached to him through his open chest, doing the job of his heart and lungs for him. I remember looking at photos of babies on ECMO before, to try and prepare myself. I should have known that nothing can prepare you for that baby being your baby. Looking at Miles, I felt helpless, wondering what would happen next.
Two days later, Miles successfully came off ECMO and we were heading back to Virginia Beach to see Barrett. I felt crazy pretending everything was ok for Barrett, but Christmas was around the corner and he was more than excited.
We might have acted like things were remotely normal, but I never stopped thinking of Miles. I was calling the PICU more times than I could count. Most likely annoying them each day, one receptionist would joke, "I know the sound of your voice Chelsea, but can I grab Miles' code again." I was texting heart mom friends to check on him through the glass. I was begging nurses for details of what he was doing, asking if he had moved or responded to any stimulus. We waited impatiently for MRI reports trying to muster up hope.
December 27th, we were faced with our first dose of reality with our MRI read. They noticed severe brain damage and gave us a list of potential developmental impacts his cardiac arrest might cause. We returned to UVA on December 29th. I told Paul we would not leave Miles. We brought Barrett with us and the amazing nurses did all of the handprint crafts with the two boys. I should have read this situation better, and accepted what I now know to be true: this was a goodbye visit.
On January 4th, we had the most difficult conversation I will have in my life. Miles' brain damage was catastrophic. We brought up every intervention we could think of to save him, but were met with glances of disappointment. "There is nothing we can do for Miles," they said, and blasted a hole through my heart. Paul and I were forced to realize the truth. There would be no more bumps, no more smooth patches: we’d hit the end of our road.
On January 6th, we held our sweet baby Miles as he took his last breath.
We are destroyed. This journey has wrecked us. Our family will never be the same. There will always be a piece missing.
As taxing as it was, we want our bumpy road back.
A New Journey
From the beginning of this experience, we wanted to start a nonprofit to support families forced on this path. We envisioned Miles sharing his success story while giving back to the CHD community. Now we will do this in memory of Miles, to honor the life he should have lived.
At Miles of Love, we’re here for the siblings. Throughout this experience, we kept thinking of Barrett and how siblings are often forgotten faces when people think of a family battling CHD. Their lives are disrupted, their sense of security is threatened, and they need support. That’s why we’re here.
At Miles of Love, we’re here for the caregivers of children battling CHD. We understand the financial impact of a sick baby, the inability to work, the seven-figure medical bills. We’re here to provide gas cards, meals, and hotel stays. We’re also here to help caregivers make memories; we provide professional family photoshoots in the hospital.
At Miles of Love, we’re thinking of the children in the cardiac PICU. They deserve comfort items to help blur the sterile feel of a hospital and make it feel like home. Anytime Miles was given a new blanket from us or the PICU nurses I remember being so happy. A blanket is now one of the last things I have of Miles that I can hold and sleep with. We want CHD children, like Miles, to receive gifts like that, to give them a sense of "normal." We hope it will never become a parent's comfort item, but we know that it just might.
Miles changed our lives forever and we hope that, through Miles of Love, he can now change the lives of others.
Although this road may be bumpy, there are Miles of Love ahead.
Photo Credit: Brooke Tucker Photography
