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There are many ways you can help children and their families get the care they need.
Patients with end-stage heart failure are evaluated to determine if a VAD is the best option and if it is safe to have the procedure. This evaluation involves many different tests.
The evaluation is also a time for education. You will learn about different VAD devices and what it is like to live with a VAD. Once the evaluation is complete, the VAD team will discuss the outcome — whether your child is a candidate to receive a VAD and if so, which VAD is recommended.
If your child is a candidate to receive a VAD, you will be notified of when the procedure will take place.
If your child is unstable, there is often not a lot of time between when the decision is made to implant a VAD and the operation. The operation typically takes between four and eight hours. You will get a detailed explanation of the operation and specific details about which device is implanted in your child’s heart. For children with complex congenital heart disease, the operation is more involved because of the abnormal anatomy and scar tissue from previous operations.
When a device like a VAD is placed inside the body, the body may react to it by forming blood clots. While your child has a VAD, she will be on medicines to prevent clots from forming (called anticoagulants and anti-platelet drugs).
Due to the effects of anticoagulants, bleeding is one of the most common complications of VAD therapy. The most common types of bleeding while on a VAD are GI bleed, nose bleed, oral mucosa bleed or internal bleeding. Your child will also have an increased risk of stroke.
In addition to anticoagulants, children with a VAD often take blood-pressure-lowering medications and diuretics (medications that eliminate extra salt and water).
Infection is a complication that can occur around where the VAD cannula(s) or driveline exits the body. We try to avoid infection with regular sterile dressing changes to keep the cannula sites clean.
Not all children with VADs can go home. The decision depends on the kind of VAD, the underlying heart problem, the child’s current condition and the supports and situation at home. The team will talk with you about what is best for your child and your family.
Discharge planning, education and home care
If your child can go home, there is a careful and thorough preparation process for leaving the hospital. Detailed family education is complemented by education for your wider community‘s first responders, teachers, employers, and clinicians (including your child’s PCP, local cardiologist, and school nurse). Boston Children’s VAD team members will work with you to develop the plan for coming to your home and community as needed to ensure adequate preparation and training.
The education plan we develop will include medication management tips, how to change a dressing, guidelines for nutrition and physical activity, and recommendations for physical therapy, if it is needed to regain strength.
Our goal is to get your child back to as many of her normal activities as possible and to make sure you are comfortable doing so.
You will have many appointments after leaving the hospital. Early on, your child will be seen in the VAD clinic once or twice a week. Our goal is to reduce this to once a month, but this will take time and depend on your child’s needs. Because of the need for close follow-up care, we ask any family who lives more than two hours from Boston to stay locally until the team feels that you have met the criteria to go home.
Each visit can take several hours and includes many tests (i.e., blood tests, echocardiograms, and electrocardiograms). In addition, your child will have a dressing change to make sure the driveline exit site has no signs of infection. We will weigh your child and conduct a careful physical exam. We will review your child’s progress and discuss any questions you have and any changes in medications and treatment.
Your child will also have a cardiac catheterization within the first three to six months after the VAD implant to measure the pressures in her heart and lungs.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”