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The Berlin Heart EXCOR device offers time and hope to children suffering from severe heart failure. Developed in Germany, this ventricular assist device (VAD) is a lifesaving innovation that acts as a temporary “bridge” until critically ill children can get a heart transplant.
What is a Berlin Heart?
The Berlin Heart is a blood pump outside the body. It is attached to the blood vessels of the heart by tubes that enter the lower part of the chest. The device increases blood flow to your child’s organs and improves organ function, which makes your child a better candidate for a heart transplant.
How does the Berlin Heart work?
The Berlin Heart varies in size based on your child’s size. There might be one or two pumps that support the right, left or both sides of the heart, depending on your child’s needs. The driver unit looks like a rolling computer cart and controls the pump(s) externally. This allows children who were previously confined to bed and breathing machines to move around and resume some regular activities.
Experts in the Berlin Heart procedure
Congestive heart failure in children is a complex condition that should be treated at a center that specializes in congenital heart defects. The Herma Heart Institute is one of the nation’s top pediatric heart programs and consistently delivers some of the best congenital heart surgery outcomes for even the most complex types of heart disease. If your child has already been diagnosed with severe heart failure at another center, we invite you to get a second opinion at the Herma Heart Institute.
We’re proud of our history of innovation that has changed the practice of heart surgery and transplant care worldwide. In 2006, before the Berlin Heart was FDA approved, one of our young patients became the first in the Midwest to use the device, buying him precious time until he was able to get a lifesaving heart transplant. Children’s Wisconsin was one of 15 sites selected to participate in the clinical study to help the device attain FDA approval for use in children. In 2018, another one of our patients became the first in the United States to return home with a mobile version of the Berlin Heart.
The Berlin Heart is just one many innovations offered through Children’s Pediatric Ventricular Assist Device and ECMO program in partnership with the Pediatric Heart Transplant Program. The Herma Heart Institute is also home to a leading Adult Congenital Heart Disease Program, allowing for seamless, high quality care across your child’s lifespan.
Who needs a Berlin Heart?
There are many heart conditions that can cause congestive heart failure. The Berlin Heart is designed to support pediatric patients of all ages, from newborns to teenagers, who are sick enough to require a heart transplant. About a quarter of Children’s heart transplant patients use some form of mechanical circulatory support, including the Berlin Heart, while waiting for their new heart. Children who have a leaky aortic valve or who are unable to take blood thinners might not be a candidate for this particular device.
What to expect during a Berlin Heart procedure
Your child will be connected to the Berlin Heart while under general anesthesia in the operating room. The surgeon will make an incision in your child’s chest and open the breast bone to access the heart, and then will use stitches to attach the tubes that connect the external heart pump to your child’s heart and blood vessels. The rest of the device will remain outside your child’s body. The pump will be turned on and then the surgeon will finish the surgery and close up your child’s chest.
After surgery, your child will spend time in the cardiac intensive care unit (CICU). During the first several hours after the procedure, your child will likely be drowsy from the anesthesia and medications given to ease anxiety and pain. Over time, your child will become more alert.
While your child is in the CICU, Children’s might use the following equipment:
- Ventilator - This machine helps your child breathe. A small, plastic tube is guided into the windpipe and attached to the ventilator, which breathes for your child while they are under anesthesia. Many children have the ventilator tube removed right after surgery, but some will benefit from remaining on the ventilator for a few hours or days afterward so they can rest.
- Intravenous (IV) catheters - These small, plastic tubes inserted into blood vessels provide IV fluids and important medications that help your child recover from the operation.
- Arterial line - A specialized IV placed in the wrist, or other area of the body where a pulse can be felt, measures blood pressure continuously during surgery and while your child is in the ICU.
- Nasogastric (NG) tube - A small, flexible tube keeps the stomach drained of acid and gas bubbles that could build up during surgery.
- Urinary catheter - This small, flexible tube drains urine out of the bladder and accurately measures how much urine the body makes, which helps determine how well the heart is functioning. Some swelling and puffiness is common after surgery, and your child might be given diuretics to help the kidneys remove excess fluids.
- Chest tube - A drainage tube might be inserted to keep the chest free of blood that would otherwise accumulate after the incision is closed. Bleeding can occur for several hours or even a few days after surgery.
- Heart monitor - This machine constantly displays a picture of your child’s heart rhythm and monitors heart rate, arterial blood pressure and other values.
Your child might need other supportive equipment while in the CICU or afterward. They will be kept as comfortable as possible with medications that relieve pain and anxiety, and the staff might also ask for your input on how best to soothe and comfort your child.
After being connected to a Berlin Heart, children will stay in the CICU and be cared for by cardiac specialists who are experts at managing Berlin Heart equipment. The area where the device’s tubes enter the skin will need to be checked and cleaned regularly to prevent infection.
Doctors will assess your child’s heart functioning before, during and after your child’s time on the Berlin Heart by conducting a physical exam, blood tests, and heart rate, blood pressure and urine output measurements. Your child’s doctor might order an echocardiogram (echo) to get a better picture of how your child’s heart is functioning on the Berlin Heart and determine whether it needs to be adjusted.
Long term outlook after a Berlin Heart
Children might need the Berlin Heart device for weeks or months, and in rare cases, years, depending on how soon they’re able to get a transplant. The device is removed when your child returns to the operating room for the transplant. Research shows that the Berlin Heart has improved survival rates for children awaiting a transplant. In some cases, a child’s heart might regain enough strength while on the device that they no longer need a new heart.
At 11 years old, Jack's need for a heart transplant soon made him the first pediatric heart patient in the U.S. to have a home VAD. Read Jack's story.