Ventricular Assist Device (VAD) Program | Patient Experience

Our team will first determine if a VAD is the best option for your child and whether it will be safe to have one implanted. If they can benefit from a VAD, we and other Boston Children’s specialists will review your child’s physical size, age, heart anatomy, and heart condition to determine which type of VAD is a best fit. We’ll also study how a VAD could potentially affect other organs, such as the liver, kidney, lungs, and brain. A key part of evaluation includes looking at how the device will interact with your child’s blood (what’s known as hemocompatibility) and which blood thinners (or anticoagulants) will be needed after implantation.

Our team will sit down with your family and explain why your child is or isn’t a candidate for a VAD. If they are a candidate, we will recommend a type of VAD, review how it operates and supports heart function, and show why we believe that type of device will best help your child. We will then start preparing your family for the implantation operation. If your child is unstable, there is usually not much time between when the decision is made to implant a VAD and the operation.

We work closely with the Food and Drug Administration, industry partners who innovate and produce VADs, and our own researchers to understand the characteristics, functions, performance histories, and safety ratings of their devices. We have been at the forefront of innovating in the field of VAD support, participating in multiple trials for devices and novel treatment strategies. We have the technical and clinical expertise to utilize all types of mechanical circulatory support available to children and adults with acquired and congenital heart disease.

An operation typically takes between four and eight hours. Before implantation, we will explain in detail the operation and how the device will be implanted in your child’s heart. For children with complex congenital heart defects, the operation can be more involved because of the abnormal anatomy and scar tissue from previous operations. VADs are often placed on the left ventricle because it is the main pumping chamber. It is called a left ventricular assist device, or LVAD.

To prevent blood clots from forming — a body’s potential reaction to a VAD — your child will take anticoagulants and anti-platelet drugs. Anticoagulants reduce the risk of stroke, which can be high with a VAD. Our program is recognized for identifying and prescribing anticoagulants that significantly reduce the risk of stroke. We will also help your family find ways to manage bleeding (nose, GI, oral) from anticoagulant use. And we can help your child avoid infection that can occur, after the operation, around the area where the VAD cannulas (driveline) exits the body. We do so through regular sterile dressing changes and close monitoring. If your child goes home, we will create a medication management plan and adjust it if needed.

Discharge depends on the type of VAD, your child’s underlying heart condition and overall health, and their level of support at home. Our team will talk with you about what is best for your child and family. Many VADs are manageable for children to go home, attend school, and participate in activities. We have successfully discharged more than 90 percent of patients who were implanted with these types of VADs, compared to the national average of 42 percent.

Following discharge, follow-up care can include blood tests, echocardiograms, and electrocardiograms. Your child’s dressing will be changed, and we will give them a physical exam. They will also have a cardiac catheterization within the first three to six months of implantation to measure heart and lung pressure.

Our team is ready to support your child and family as soon as you get home. Life with a VAD takes adjustment and can raise questions that don’t seem to have easy answers. We will provide your family with a plan to be ready for the first day home and beyond. We’ll also stay in touch with your local primary care doctor and cardiologist.

We will talk to your local police and fire departments so they will know your child has a VAD in case of emergency, and we’ll let your local utility know that you can’t experience a prolonged power outage if the device is recharged through an electrical outlet. We’ll also work with your child’s school so they will have proper support to resume their education. Our team will also connect you with Boston Children’s occupational and physical therapists, speech-language pathologists, dietitians, and child life experts to help your child get the support they need to live a life without boundaries.