Photo Courtesy of MelissaJoy Photography
Update (October 4, 2018):
A mere week after this story was shared, the moment everyone was hoping for finally arrived. Remy Bowes is now exactly where he belongs: at home, with his family. “It feels great to have Remy back home,” says Dr. Wallis. “That has been our goal from day one and we’re so happy the day is finally here."
Laurie and Everett Bowes are just like all loving parents. They talk about their children with pure love and enthusiasm. They collect precious family photos and videos on their cellphones. And they’d do anything – absolutely anything – to make sure their kids have the best futures possible.
Their youngest son, Remy, has spent the first part of his little life at Levine Children’s Hospital, battling a viral heart condition, gaining strength, waiting for a new heart – and hoping for healing.
When Remy first arrived at the hospital, he was just a week old, with seconds to spare – his heart began to fail shortly after he was carried through the emergency room doors. If he hadn’t been right there, right then, it’s unlikely Remy would’ve survived. “It’s kind of like telling you you’re going to have a heart attack today. Do you want to have it at home, or do you want to have it at the emergency room in the hospital?” says Everett, Remy’s dad. “That’s literally what happened.”
Call it what you want, Remy was at the right place at the right time on the day he arrived at LCH. But his parents and doctors knew it would take more than luck to heal his failing heart.
All in for Remy
From the ultrasounds taken before Remy was born, to the tests performed after, everything pointed to a healthy baby boy. He was eating, growing and seemed to be doing everything newborns are expected to do.
The first sign Remy might be sick was so small, it was hardly noticeable. “He felt not warm,” recalls Laurie, Remy’s mom. “It wasn’t that he felt cold – he just didn’t feel warm.”
Then, when Remy refused to eat, Laurie knew something was undeniably wrong. Thinking their baby was dehydrated, Laurie and Everett took Remy to his pediatrician, where the first thermometer read showed a temperature of 93.1. And so did the second – and the third.
A temperature so low is considered hypothermic and life-threatening, and things moved quickly from there. By the time Remy made it to the emergency room at Levine Children’s Hospital, he wasn’t breathing. And then, his heart stopped completely. This wouldn’t be the last time Remy would go into cardiac arrest – it would happen once more, before he was connected to an ECMO (extracorporeal membrane oxygenation) machine, which could act as both his heart and lungs.
The doctors and nurses worked late into the night, performing every test and doing everything they could to figure out what was wrong with little Remy. Before the sun had even risen, the Bowes family had their diagnosis: viral myocarditis, an inflammation that had left Remy’s heart severely scarred and swollen. With a condition so rare it only affects 1 or 2 in every 100,000 kids, the doctors knew a heart transplant might be Remy’s best chance for survival. And the newborn was put on the highest priority transplant list, waiting among the most critical patients.
The chance for a miracle
Neonatal hearts like the one Remy would need are uncommon, and waiting can be the most difficult part. Remy’s care team – including pediatric cardiologist Gonzalo Wallis, MD, and pediatric cardiac surgeon Thomas Maxey, MD – refused to give up and give in to the waiting. They remained determined to find a way to heal Remy’s heart, without a transplant.
“Treatment for Remy is a little bit of common sense and a little bit of medicine,” says Dr. Wallis. In what Dr. Wallis calls “a labor of love,” Remy’s care team began working on therapy and medications to help Remy get bigger and healthier – and to help his heart squeeze and beat better.
The first step, says Dr. Wallis, has been to help Remy grow and get the strength and energy he needs to heal. The second step has involved medications, including those that help Remy’s heart squeeze more effectively, those that slow down his heart just slightly, and those that help get rid of any extra fluids around his heart.
From being on the ECMO machine, to the ventilator, to the transplant list, to an assortment of medications, Remy has spent his first few months fighting for his life. “It’s just part of our story,” says Laurie. “The fact that he even opened his eyes and is living is a miracle.”
As scary as having an experience like this would be for any parent, and as uncertain as every day might be, Laurie and Everett have never stopped hoping for another miracle – and neither has Remy’s care team. From the doctors who get choked up talking about Remy to the nurses who stay up throughout the night to check on him, the Bowes family says that everyone at LCH treats Remy like he’s their own child.
And there’s still hope for yet another miracle for baby Remy: While he’s not completely in the clear yet, there’s a new, extraordinary chance Remy will be able to go home stronger, healthier – and without a heart transplant. Thanks to the steady determination of his family, doctors and a coordinated care team, Remy’s not only off life support machines, but he’s also gaining weight and taking lower doses of the medications that were once keeping him alive.
Whatever’s next for Remy, Dr. Wallis knows one thing is certain: “We’ll be there to take care of him.”
