Diaphragm Pacing

Congenital central hypoventilation syndrome (CCHS) is a rare genetic disorder of the nervous system that affects how a child’s body controls breathing. Children with CCHS may breathe too slowly or shallowly, especially while sleeping, resulting in low oxygen levels and higher carbon dioxide in the blood. While the severity of CCHS can vary, children with CCHS typically require lifelong ventilator support to help them breathe. Some may need continuous ventilator support, while others may only need ventilator support when they sleep. CCHS can affect other body functions such as blood pressure, heart rate, body temperature and bowel function, making coordinated, multidisciplinary care important.

Diaphragm pacing, sometimes known as phrenic nerve stimulation, is a unique treatment in which a lightweight, battery-powered electronic device called a diaphragm pacemaker is used to support breathing.

During the procedure, your child’s care team surgically places electrodes on the phrenic nerves in the chest. These nerves help control breathing.

The phrenic nerve electrodes are stimulated by a small battery-operated control box (transmitter) that is worn outside the body, causing your child’s diaphragm to contract and allowing air to flow into the lungs.

What are the benefits of diaphragm pacing?

A diaphragm pacer allows children who are dependent on a traditional ventilator full time to be free from ventilation during the day, giving them more mobility. Since the diaphragm pacer device is small, portable and does not require any tubes, it allows children to participate in school and other activities without being attached to the ventilator circuit.

For some children who only need a ventilator while they sleep, diaphragm pacing may make it possible to remove their tracheostomy tube.

At Children’s, we are one of only a few pediatric hospitals in the country with a team dedicated to caring for children with CCHS. A service offered through our Pulmonology Program, we bring together a multidisciplinary team of specialists to help support independence, mobility and a normal life.

Why Choose the Children’s Diaphragm Pacing Program?

• Coordinated treatment: The Children’s Diaphragm Pacing Program brings together a team of specialists from a variety of disciplines, including pulmonology, critical care, general surgery, cardiology and sleep medicine. Our team will guide you through each stage of treatment, coordinating care to help your child achieve the best possible outcome.
• Nationally ranked care: Children’s Pulmonology is the only nationally ranked pulmonary and lung surgery program in Georgia. If your child needs a diaphragm pacer, you can be confident that your child is being cared for by an experienced team.
• Specialized pediatric anesthesia support: Because diaphragm pacers are placed during surgery, our pediatric pulmonologists collaborate with pediatric anesthesiologists. Our pediatric anesthesiologists understand the unique considerations in managing breathing and ventilation during anesthesia, and help ensure the diaphragm pacing procedure is performed safely.

Children's Diaphragm Pacing Program brings together a multidisciplinary team of specialists. Our team includes the following providers:

• Cardiologist: Chad Mao, MD
• Critical Care Medicine Doctor: Pradip Kamat, MD
• General and Thoracic Surgeon: Matthew Clifton, MD
• Geneticist: Rossana Sanchez Russo, MD
• Pulmonologist: Ajay Kasi, MD
• Respiratory Therapist: Walter Reeder, BS, RRT
• Sleep Medicine Specialist: Roberta M. Leu, MD

Outpatient clinic visits for our diaphragm pacing program are held at the Center for Advanced Pediatrics. Surgical procedures are performed at Arthur M. Blank Hospital.

Center for Advanced Pediatrics
2174 North Druid Hills Road NE
Atlanta, GA 30329

Arthur M. Blank Hospital
2220 North Druid Hills Road, NE
Atlanta, GA 30329