Supporting Children with VADs

Vetricular Assist Devices (VADs) are machines that takes over a heart’s job of pumping blood.  The VAD is implanted in a person’s body, and is connected to a battery pack.  It squeezes the heart, pushing blood through the body.

Doctors put a patient under general anesthesia when they implant a VAD, so the person is not aware of what is going on.  After a patient recovers from the implant surgery, they are usually awake and breathing on their own while on a VAD. 

Many VADs are portable, so patients can walk around and do activities while receiving VAD treatment. 

 VADs usually stay in place for days or weeks.  Sometimes, they are in place for years. 

 There are three kinds of VADs:

• Left Ventricular Assist Devices (LVADs) pump the left ventricle of the heart, pushing blood out of the aorta and through the body

• Right Ventricular Assist Devices (RVADs) pump the right atrium of the heart, pushing blood out of the pulmonary arteries and into the lungs

• Biventricular Assist Devices (BiVADs) pump both the left ventricle and the right atrium of the heart, pushing blood into the lungs and throughout the body

Families will work together with their medical team to determine what kind of VAD is most appropriate for a particular child.

Children, teens, and young adults also need to be prepared for their VAD surgery.  The preparation depends on how old the patient is, and how much they talk and understand.

Families can ask their hospital team for help in telling their child about the VAD. Usually, a nurse, Child Life Specialist, psychologist, or social worker can help families to plan and conduct these conversations.

 Families may want to tell their child:

• Their family and medical staff care about them, and want them to get better

• Their heart is not working well enough to keep them healthy

• A machine called a VAD can help their heart to pump better

• After the VAD, the family and doctors will work together to decide if the child should have further treatments

Families and medical staff can invite a young person to ask whatever they are wondering about the VAD. Adults are often surprised by what kids think about and wonder about. Adults should answer what their children ask, without providing extra information.

Caregivers can help young people prepare for a VAD by previewing what will happen.  They often can:

• Read social stories about VAD surgery, and living with a VAD

• Visit the hospital floor where they will stay

• Watch videos for kids about having a VAD

Caregivers can help young people prepare for a VAD by previewing what will happen.  They can:

• Read social stories about VAD surgery, and living with a VAD

• Visit the hospital floor where they will stay

• Watch videos for kids about having a VAD

• Talk with other kids who have gone through a VAD surgery

Families can ask their transplant team, Child Life specialists, and cardiac neurodevelopmental team for resources to help preview the VAD surgery. In many hospitals, Child Life specialists can make a personalized social story for each child.

Caregivers of older children, teens, and young adults should be prepared to answer difficult questions about the VAD surgery. Young people may wonder if they will die, and what treatments (if any) will come next. Hospital staff including social workers, the palliative care team, and Child Life specialists can help parents to anticipate and respond to questions.

Most experts suggest being honest but hopeful in talking about the future with sick children.  Usually, caregivers can tell the young person that their doctors and family believe they will survive the surgery and feel much better.  Planning an activity or event for after the VAD surgery can help young people feel hope for the future. Caregivers can assure children that they are safe, that loved ones are with them, that they are being taken care of, and that they will never be alone.

Patients with VADs and their families usually feel high levels of stress while they wait for transplant.  Most young people do better with a therapist who can help them to manage their worries, fears, hopes, and emotions.

If they have time to prepare for VAD surgery, family members may be able to:

• Connect with other families living with a VAD

• Ask to see what a VAD looks like, and how to use it

• Arrange logistics for the hospital stay, such as:

  • Caregiving for other children

  • Cleaning and cooking

  • Pet care

  • Driving, parking, and transportation

  • Hotel rooms

  • Taking family leave

• Pack a hospital bag, including

  • Pajamas

  • Slippers

  • Toothbrush and toothpaste

  • Preferred soap and shampoo

  • Medications in original packaging

  • Change of comfortable clothes

  • Activities (book, puzzle, knitting, toys)

  • Headphones

  • Devices

  • Chargers

  • Comfort objects (blankie, stuffed animal, pacifier)

  • A blanket

  • A record of important phone numbers

  • Eye glasses

  • A special gift that the child can open after the surgery

A VAD surgery usually takes about 4-6 hours, but can take longer if it is particularly complicated.

When a young person is in a VAD surgery, they do not feel anything, and do not know where they are. They are not aware of anything until they wake up in the cardiac intensive care unit (CICU). 

Families can ask the care team when they will get updates on their child, and how they will get the updates.  Families can tell the care team how they would prefer to receive information about their child’s progress.

Family members can try to plan how they will take care of themselves during their loved one’s VAD surgery. For example, they may want to plan:

• What and when they will eat and drink, and who will get the food and drink

• Comfort items to bring along, such as a soft blanket, religious book, smooth stone, or nice-smelling lotion

• Who they want with them

• Calming strategies they want to use

  • Meditation

  • Walking or yoga

  • Talking back” to worries

  • Grounding: focusing on the sensations of the current moment

  • Visualizing what they will do with the child after the surgery

• Activities for distraction, such as:

  • Watching a TV show or movie

  • Playing a game on their phone or computer

  • Knitting or sewing

  • Reading a book

  • Crossword or sudoku puzzles

  • Walking

  • Calling a family member or friend

After VAD surgery, patients begin their recovery in the cardiac intensive care unit (CICU).  At first, most patients are on a ventilator, a machine that breathes for them.  As they get stronger, patients are weaned off the ventilator so that they can breathe on their own.

Once a patient is stable, they are usually moved to a regular hospital room.  Some patients must stay at the hospital for the whole time they have a VAD. Other patients can leave the hospital and even go home with a VAD.

Once a patient with a VAD is feeling better, they can breathe, talk, walk, and play. They may even be able to go home, and attend their regular activities outside of the hospital. 

During their hospital stay, staff teach families and patients how to live well with a VAD.  They learn:

• How to operate the VAD

• How to carry the VAD (if it is outside the body)

• How to make sure the VAD is always charged

• How to do activities safely

• How to eat well while on a VAD

Even while they are in the hospital, most young people can work on regaining skills and strength.  Families can talk with hospital staff about therapies such as:

• Physical therapy (PT)

• Occupational therapy (OT)

• Speech and language therapy

When young people start these therapies as soon as they are ready, their recovery is usually faster and easier.

School-age patients should receive hospital tutoring from their school district as soon as they are well enough to learn. All students ages 5-18 can receive hospital tutoring. Preschoolers (ages 3 and 4) and young adults (ages 18-22) can receive hospital tutoring if they qualify for Special Education. Caregivers should call their school districts to arrange hospital tutoring as soon as their child has recovered enough to participate. 

Children and their families often experience big feelings and difficult thoughts while they are recovering from VAD surgery, and waiting for a transplant.  Usually, everyone in the family can feel better with therapy.  Caregivers can ask their doctors to recommend a therapist, or use the links below.

Some patients must stay in the hospital the whole time they have a VAD.  Other patients are able to go home with a VAD.  Families can talk with their medical team about if their child is eligible to be discharged with a VAD.

 Before a family goes home with a VAD, the hospital offers extensive training on how to use the VAD, both at home and in the community. Families should ask all their questions, and be sure they feel totally comfortable managing the VAD on their own. Families will need to show nurses what they know about using a VAD, and may even take a test to show they can operate it safely.

 The hospital also works with the family to make sure the community is ready to keep a child with a VAD safe.  Hospital staff often:

• Visit the home to check electrical outlets, and make sure that the VAD can stay charged

• Train the school nurse and local paramedics about the VAD

• Call the electric company, to be sure that electricity in the patient’s home is a priority

 Families can ask their medical team if they have any questions about a child's safety at home or in the community.

Most hospitals help families practice going on an outing in the community with a VAD before they go home.  Families may start by going on a walk, and then go on longer outings, with a nurse along for safety.  The whole team works together to make sure the family can manage the VAD safely.

 While going home with a VAD can be hard and stressful, most families say that it is worth the effort.  When patients go home with a VAD, they are usually able to do many of their usual activities. For example, patients at home with VADs can often:

• Go to school

• Participate in activities like dance, art, and sports

• Play with friends

When a child has a VAD, the whole family is affected. A VAD offers time and hope, but can also bring stress or sadness. Families need to know that professionals at the hospital and in the community are available to support parents, siblings, and sick children throughout the VAD experience.

This content was reviewed by staff at Boston Children's Hospital.

Care is usually best when it is local. Families local to Boston can seek support from the VAD Program, the Cardiac Neurodevelopmental Program, Child Life, Spiritual Care, Social Work, and/or the advanced care team. Families in other regions can click below to find local care.

Links to additional sources of support are provided below. These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.