By: Laura Gould, MS, CCLS
Outpatient Radiology
Children's Hospital of Philadelphia

The United States celebrates American Heart Month in February. This is also true in several other countries including Canada, the United Kingdom, and the Philippines (Anne, 2016). February is a time to promote cardiovascular health and research for both adults and children. Cardiac care has advanced in the past few decades. One of the growing medical interventions in pediatric heart failure is the use of ventricular assistive devices, also commonly referred to as VADs, as a bridge to heart transplant (Dipchand, 2018).

What is a VAD?

“A VAD is an external machine that does the work of the heart and is often a bridge to transplant,” said Samantha Bachrach, a Certified Child Life Specialist (CCLS) on the cardiac intensive care unit/cardiac units at Children’s Hospital of Philadelphia. A 2010 study out of The Hospital for Sick Children in Ontario, Canada found that VADs provide an effective way to bridge children with advanced dilated cardiomyopathy or heart failure to transplantation (Humpl et al., 2010). The use of VADs has increased in pediatrics with over 50% beyond the infant age group being transplanted from VAD support (Dipchand, 2018).

How is Child Life Involved in Working with these Children?

Child life specialists work with infants through young adults needing a VAD. They assess children’s developmental level and provide education at a child’s level. Once a child has a VAD, child life promotes coping, aids in adjustment, assists with dressing changes, and promotes development especially in light of mobility considerations with external devices being attached to the child. Child life specialists promote continued conversation about transplant which is the most common end goal for patients with a VAD, discuss what that may look like, and provide self-expression opportunities.

Procedural Support During Dressing Changes

“Dressing changes are an area where child life is heavily involved,” stated Samantha. “A Berlin Heart is the most common VAD we see for our infant population, and child life is readily available in dressing changes twice a week,” continued Samantha. Child life may hold an infant’s hands to keep the area sterile through comforting, positive, gentle touch and offer sweet ease and/or a pacifier, and sometimes sing or provide other distraction,” Samantha shared. Her child life colleague also on the cardiac units, Elizabeth Becraft, CCLS, added that for dressing changes it is also important to invite the parents into care. They stated they have had families who did not know they could be present. It was their role to advocate for the parent to be involved as well as to talk the parent through what to expect during the first few dressing changes and allowing them to be the one facilitating comfort to their child. “And other parents have chosen to step out and that’s okay too,” both Samantha and Elizabeth echoed each other. “At our hospital, the older children usually have a different kind of VAD that may only need once a week dressing changes, and I try to be there the first few and in my experience, I have found that the school age and adolescent patients develop routine and a coping plan and generally begin to cope well,” Samantha states, “and we find that these children no longer need our presence for each dressing change.” Empowering the children, enhancing interdisciplinary communication, and helping caregivers to advocate is a role the child life team sees themselves doing on the cardiac units. The first few dressing change supports with a school age child or adolescent may include providing verbal prompting of the sequence of events and creating a plan with realistic choices for the child such as type of distraction and support.

Child Development and Normalization

Child life’s role then transitions into promoting normalization of the hospital environment for those patients who need to live in the hospital while awaiting transplant which is required for those on the Berlin Heart VAD. “Knowing these kids are going to have long-term hospitalizations we try to make memories, and promote normalization,” Elizabeth stated. “The hospital becomes like their home,” Elizabeth continued. “We are enlisted by our VAD education coordinator to help create schedules,” Samantha shared. For long term patients, schedules can promote routine, structure, and predictability as well as allowing child life to know when a good time may be to come do play or education sessions. Schedules can include dressing changes, physical therapy, occupational therapy, free time, and some patients may also have additional therapies such as art or music therapy.

Special events are also a fun way to get families involved in normalization whether that’s doing handprint/footprint crafts for various holidays or having a costume parade on the unit. “We also do birthdays up big on the unit,” Elizabeth stated.

The Royal Children’s Hospital in Melbourne, Australia piloted a VAD playgroup twice weekly for children ages 0-3. Parents reported increased confidence in positioning their children for play as well as increased mobility of the children, which had benefits such as increasing children’s communication skills through opportunities for socialization. No adverse events requiring medical attention were noted during the pilot period (Barr et al., 2020).

Heart Month

February is a time to recognize the importance of cardiovascular health, celebrate cardiac patients, and this often involves special activities for cardiac pediatric patients and families such as a heart month dance party.

Heart Month extends outside the hospital walls promoting cardiac health in the community through education and outreach initiatives. Elizabeth shared she will also be taking part in the Children’s Hospital of Philadelphia’s annual spin-in fundraising to raise money for pediatric cardiac research.