STANFORD — Marvin and Amanda Benedict are self-described techies. They both work at Google, so they naturally love automation, and they joke that it’s fitting that their daughter now has an automated device.
At 5 pounds, 9 ounces at birth, Bronte very well may be the smallest baby in the nation to have an automated implantable cardioverter defibrillator (ICD) placed in her body.
You’re likely aware of defibrillators that are used to send an electric pulse or shock to the heart to restore its normal heartbeat. What you probably don’t know is that mini-defibrillators can be placed in people’s bodies to do essentially the same thing.
“I call an ICD a pacemaker plus. It does not only recognize a slow heart rhythm and reset it; it also recognizes a fast heart rhythm and can give a shock when someone is having a life-threatening arrhythmia,” says Anne Dubin, MD, electrophysiologist and director of Pediatric Arrhythmia Service at Lucile Packard Children’s Hospital Stanford. “Most of the time it does nothing—just sits, watches, and waits. It’s like an insurance policy.”
A week after Bronte was born, the Benedicts took her in for a routine checkup. They expected to hear the usual—how long she was and how much weight she gained. Instead, their San Francisco pediatrician detected a fast heartbeat and rushed them across the street to a hospital associated with Stanford Children’s Health. A cardiologist did an ultrasound-guided EKG and said her heart was beating much too quickly. Bronte was put in an ambulance and taken to Packard Children’s Hospital.
“We went straight to the Cardiovascular Intensive Care, and within three minutes a team of 15 to 20 doctors, nurses, and technicians were around her,” Marvin says.
Doctors determined that Bronte’s heart was structurally sound, but she had a dangerous type of arrhythmia—not just in her upper chamber but also in her lower chamber, which has been known to cause death in infants.
“Everyone went above and beyond. One nurse held and rocked her all night long. The team did a wonderful job educating us and including us in all their decisions. We felt like we had a voice the whole time,” Amanda says. “We called Packard Children’s Hospital home by the time we left.”
“At no point did we feel rushed. There were a thousand medical terms, but they would patiently sit down and explain them to us,” Marvin adds. “One doctorate fellow had a tattoo of the heart condition she was most intrigued with. That really struck me. I thought, these people are not messing around.”
Doctors gave Bronte medicines to control her abnormal heart rhythm, which seemed to work at first. Then, at three weeks old, she developed an abnormal ventricular rhythm, where her heart beat dangerously fast despite the medicines.
“We decided the safest thing to do was to place an ICD. They are made for 200-pound adults, not for 6-pound babies, so Katsuhide Maeda, MD, cardiovascular surgeon at Packard Children’s Hospital had to be very inventive,” Dr. Dubin says. “Bronte was young, but she wasn’t our youngest—our cardiothoracic surgeons put them in babies as young as 3 to 4 days old.”
ICDs are about the size of an old flip phone, and they have two parts—wires (leads) and the generator itself. In adults, ICDs are placed below the collarbone, but in small babies, they are put in the abdomen. The leads are then sewn onto the surface of the heart.
“Because Bronte was so tiny, we didn’t know if we could place an ICD until we opened her chest,” says Dr. Maeda. “She is likely one of the smallest babies in the nation to ever receive an ICD. She was definitely my smallest.”
Amanda and Marvin appreciated getting updates while they waited in the cafeteria during the approximately five-hour surgery. Throughout their entire stay at Packard Children’s Hospital, the Benedicts noticed firsthand the degree to which doctors and nurses collaborate throughout a patient’s treatment.
The multilayered care they received went well beyond the team of top doctors who considered Bronte’s care from every angle. It also included nurses who would check in even when Bronte was not their patient, and child life therapists and occupational therapists who provided knitted caps, socks, and kind words—making the Benedicts “feel like we had 14 different grandmothers around.” Not to mention the family rooms with showers and beds, and a social worker to sort through insurance and emotions.
“We joked that it was a spa, not a hospital. There were so many resources that we never knew we needed, but found them so necessary to have,” Amanda says.
“It’s rare for hospitals to place ICDs in babies of this size. It’s simply too challenging,” Dr. Maeda says. “Other hospitals don’t have the luxury of having a highly knowledgeable and diverse team of pediatric specialists like electrophysiologists, cardiovascular surgeons, and geneticists, and all under one roof. That’s what makes Packard Children’s Hospital special.”
Now, the couple relies on Bronte’s ICD to do the worrying for them. Each night, data on Bronte’s heart is uploaded to the hospital, along with data from 400 other babies and children with heart monitoring devices. She has yet to need a shock.
“We feel like, in all senses of the word, we have a community watching out for us,” Marvin says.
At nearly three months, Bronte is a happy baby. She is starting to smile, and she loves kicking her legs and moving around. When Amanda and Marvin change her, they can see her ICD under her skin, but it doesn’t bring alarm, it brings comfort. “We are very comfortable with what’s inside her body,” Amanda says. “It allows us to sleep at night.”