Holly Monroe’s gut instinct told her something didn’t feel quite right about her 3-month-old son, Calvin.
Seemingly minor things, mostly.
He wouldn’t nurse well, he had a glazed look in his eyes and he seemed to be waking a lot at night, crying. One night he let out a deep moan that simply didn’t sound right.
She wondered: Is this normal for a new baby, or is something wrong?
During a pediatrician’s office visit for her older son, she decided to ask the doctor to listen to Calvin’s heart.
The day: New Year’s Eve 2014. That’s when things got scary.
The pediatrician immediately called Spectrum Health Helen DeVos Children’s Hospital and told employees there that Calvin would be on his way. Holly called her husband, Josh, on the way, and he met them there.
When Calvin arrived, doctors quickly began working to correct his irregular heartbeat. Inside of an hour they sent him to the pediatric intensive care unit.
There, his heart stopped. Doctors brought him back to life within minutes and placed him on an extracorporeal membrane oxygenation, known as an ECMO—a state-of-the-art heart and lung bypass machine.
“He was barely hanging on,” Holly said. “We basically had a choice of ECMO or death.”
As they sat waiting for news from doctors, Josh remembers feeling “pure, unadulterated terror.”
“The night before, we were at a late Christmas party with my family,” he said. “And now my son was on his death bed.”
Helen DeVos Children’s Hospital is the only hospital in Western Michigan to provide ECMO for children. The hospital has had ECMO since 1992. It’s used to treat about 25 children per year there, according to Brian Boville, MD, a pediatric critical care doctor.
Without help from the machine, Calvin may not have survived.
Today, he’s an healthy, happy, energetic 3-year-old boy.
“My heart better,” Calvin said as he played in his living room in Wyoming, Michigan, on a recent afternoon. His brother, Abram, 4, and sister, Ginny, 18 months, joined him.
Calvin had been too young to remember that night in 2014, but he knows he’s here today because of the care he received in the intensive care unit.
After Calvin’s birth, borderline readings on his pulse oximeter tests caused doctors to perform an electrocardiogram test.
As a result, doctors diagnosed him with Ebstein’s anomaly, a congenital heart defect in which the tricuspid valve, located between the two right heart chambers, doesn’t work properly. This allowed blood to leak back through the valve, causing the heart to work less efficiently.
He also had a hole in his heart, which somehow worked to offset some of the effects of the Ebstein’s anomaly, Holly said.
Alerted to the condition, Holly and Josh were referred to a pediatric cardiologist for treatment.
Calvin’s heart defect predisposed him to supraventricular tachycardia, an arrhythmia or rapid heartbeat. Turns out, Calvin had likely been in supraventricular tachycardia for weeks, causing the symptoms Holly and Josh had noticed.
His little heart had been working much harder than it should have been.
“They told us it was like he was running a marathon for two weeks,” Holly said.
Dr. Boville said that when Calvin came to the emergency department, they tried two medicines, as well as shocking his heart with a low-voltage shock, to stop the arrhythmia.
When those treatments didn’t work, they quickly sent him up to the intensive care unit, where he went into cardiac arrest within minutes.
Thankfully, Dr. Boville and his colleague, pediatric cardiologist Christopher Ratnasamy, MD, were ready. They had him back after about six minutes, although his heart began functioning at only about 10 percent normal at that point.
They knew he needed the ECMO machine. Marcus Haw, MD, a pediatric cardiothoracic surgeon, helped put Calvin on ECMO.
“ECMO was done to rescue him,” Dr. Boville said. “If a patient’s heart or lungs are failing, it steps in and does the pumping and oxygenating of blood while the heart and lungs recover.”
The ECMO machine is attended around-the-clock by a specially trained technician, as well as an intensive care unit nurse. Patients typically spend anywhere from five to 14 days on ECMO, although some children have needed it for a period of months.
Calvin stayed on ECMO for seven days while everyone waited to see how his body would respond. Meanwhile, there was talk of surgery or a possible heart transplant if his heart didn’t recuperate.
“It was literally keeping him alive,” Holly said.
Gradually, doctors started pulling back on the ECMO. Every time, Calvin’s heart compensated, until one day everyone watched in amazement as his heart completely took over.
“We all—the doctors as well—felt like we were witnessing a miracle,” Holly said.
Nine days later, the Monroes went home.
A hopeful future
Since then, Calvin has continued to meet regularly with Dr. Ratnasamy. His supraventricular tachycardia has gone away for now, and he’s allowed to remain active as he prefers, Holly said. He likely will eventually need open-heart surgery to repair or replace the valve affected by the Ebstein’s anomaly.
Dr. Boville credits the happy ending to Holly’s instincts—and Calvin being in the right place at the right time.
“This was a great catch by mom to say that something was not right,” Dr. Boville said.
Holly trusts herself more now.
“I questioned my gut so much during those first three months,” she said. “Now, I don’t care if people think I’m crazy.”
And they tell Abram that his allergy to dogs—the reason they were at the pediatrician’s office that day—saved Calvin.
New Year’s Eve tradition
Now, every New Year’s Eve, the family returns to the intensive care unit to thank the doctors and nurses, some of whom were part of the team that cared for him three years ago.
“The nurses were amazing,” Holly said.
They still keep in touch with one of those nurses, Vanessa Steen. During their visits to the hospital, they also make a point to show Calvin the plaque honoring Dana Carter, an intensive care unit nurse who died in a car accident in March 2015.
Carter did chest compressions on Calvin when his heart stopped. She continued to care for him throughout the boy’s stay, sometimes switching her schedule to be there for the Monroes.
“We don’t want them to forget that we’re thankful,” Holly said.
In the quiet moments—when Josh lays with Calvin at night, for instance—that New Year’s Eve in 2014 seems like just yesterday.
“I realize all the time that I wouldn’t be able to do this, to sleep next to him, if things had gone different,” Josh said.