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Four-year-old Reina’s heart stopped beating one day while she was in her Petaluma home with her parents. Her father, Jorge, performed CPR until the paramedics arrived and airlifted Reina to a hospital. Reina, who had led a perfectly normal life until that moment, was diagnosed with catecholaminergic polymorphic ventricular tachycardia, a rare and inherited arrhythmia syndrome that can cause sudden death if left untreated. Luckily, our Electrophysiology and Arrhythmia Care Team specializes in cases like Reina’s and was ready save her.
As this story from Lucile Packard Children’s Hospital Stanford describes, Reina was given an implantable cardioverter defibrillator (ICD), a surgically placed device that continuously monitors her heart rate. The ICD consists of wires that carry electrical signals from the heart to a small computer inside a metal box. It is both life-saving and life-changing.
Most of the time, an ICD monitors an arrhythmia patient’s heart rate without the individual noticing. But when the device recognizes that the heart rate has sped up to an abnormally fast pace, it delivers a powerful discharge of electricity that reverts the rhythm back to normal.
That charge saves lives, but has been described as similar to “being kicked in the chest.” The patient may feel like they have had the wind knocked out of them and need time to recover.
The knowledge that an abnormally fast heart rate could cause the device to fire at any moment hangs over patients and their families. Activities that were once fun, like playing a sport or going for a hike, can become unpredictable and scary.
“The emotional response to receiving an ICD varies from one patient to the next, but one common theme is a feeling of uncertainty or anxiety,” explains Lauren Mikula Schneider, PsyD, clinical assistant professor at Lucile Packard Children’s Hospital Stanford and one of the founders of a year-old Cardiac Psychology Program in our Children’s Heart Center. The program, funded by donor support, ensures that the psychological well-being of ICD patients is an integral part of their clinical care.
“The support of our donors has allowed psychologists to be present in the Children’s Heart Center and give us the opportunity to develop new practices and research that will help children and their families adjust to their new reality,” says Schneider. She and a team that includes Anne Dubin, MD, professor of pediatric cardiology; Scott Ceresnak, MD, assistant professor of pediatric cardiology; Kara Motonaga, MD, clinical assistant professor of pediatric cardiology; Korey Hood, PhD, clinical professor of psychiatry and behavioral sciences as well as endocrinology and diabetes; Richard Shaw, MD, professor of psychiatry and behavioral sciences; Tony Trela, RN, MSN, CPNP-PC; and Debra Hanisch, RN, PNP, created the program to expand on the success of an annual one-day event called Connecting, where heart patients meet with peers and medical professionals to share experiences and be inspired to move beyond limitations of a life with an ICD.
“There is a great deal of research regarding the anxiety and depression found in children and their families following ICD implantation, but very little work being done to alleviate these issues. This program is the first step to help address the very real psychological problems this population faces,” says Dubin, who is the director of the pediatric arrhythmia service.
It’s not uncommon for a child to ask, “Why me?” after receiving a life-changing diagnosis and device. While cardiologists work to get the physiological function of the heart back in working order, Schneider and her colleagues meet with patients and their families to care for their emotional health. Prior to the diagnosis that led to the ICD device, a child may have had an episode of cardiac arrest. Understandably, this can be traumatizing for parents and siblings, with PTSD-like reactions being common.
“We aim to treat the entire patient, not just the cardiac issue that brought them to our attention in the first place,” explains Dubin. “While it is critical to insure a patient doesn’t experience a life threatening event, it is just as important to try and ensure they have good quality of that life.”
The team meets with every family whose child has received an ICD.
“We discuss their concerns about coping with the device, and how this will impact their family for the rest of their lives,” says Schneider.
For patients who need ongoing support to work through depression or anxiety, the Cardiac Psychology team holds individual sessions weekly or monthly in response to the patient’s situation. As patients adjust to their new reality and assimilate the ICD into their life and future, appointments are scaled back and often coincide with annual clinic check-ups.
“We want to normalize the integration of psychology into the clinical care of patients in the Heart Center and beyond,” Schneider adds. “Our model is rare, and we are one of the first children’s hospitals to integrate psychologists into an electrophysiology and arrhythmia clinic. We are able to see every patient at least annually to ensure they are healthy in all ways—including their mental health. Our hope is that the more integrated psychologists are in the clinic, the more accessible we will be to all patients.”
To support extraordinary care in our Children’s Heart Center, please visit supportlpch.org/heart.