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Chromosomal and Genetic Conditions

Jeune Syndrome

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Treatment for Jeune syndrome starts with providing any care children need to help them breathe.

Jeune Syndrome Treatment Options

Babies born with severe breathing problems need care right away. They may need help from a breathing machine (ventilator). Doctors place a tube through your baby’s mouth and down the windpipe. The ventilator delivers air through the tube into your baby’s lungs, and then it releases pressure so the baby can exhale. This helps get oxygen in and carbon dioxide out.

Some children with Jeune syndrome don’t need a ventilator right after birth. But they may need it later, for example, if a lung infection makes breathing more difficult. Preventing and treating infections is an important part of care. Your child’s health-care team may give your child antibiotics, use suctioning to remove mucus from airways, or use postural drainage. This means placing the child in a position that will help mucus drain so it doesn’t impair breathing.

Some children will have difficulty eating on their own. They may need a feeding tube called a gastrostomy (pronounced gas-STRAH-stuh-mee). For a gastrostomy, the surgeon makes a small opening through the wall of your child’s belly and places a tube into the stomach. This provides a safe way to give your child nutrition until they can eat by mouth. Your child's doctors, in consultation with our dietitians, will determine if your child needs this. They will discuss the options with you.

Surgery for Jeune Syndrome

Surgery to enlarge the rib cage may be an option for some children who cannot breathe well enough by other means. Our surgeons use several procedures to expand the chest and potentially allow more room for the lungs to expand and grow. Which procedure is best depends on your child's age.

One procedure involves dividing your child’s ribs at the front and the back. Then, using cables and wires, the surgeon attaches a titanium rib (VEPTR) to your child's natural ribs. This expands the chest cavity. The VEPTR is an adjustable device that is expanded once every six months. This way, the child's chest continues to get bigger as the child grows. Because of the magnitude of the surgery, surgeons do the operation on only one side at a time.

The VEPTR is best used in children who are at least 8 or 9 months old. Other procedures can be done for children who are younger and need an operation.

Who Treats This at Seattle Children's?

Should your child see a doctor?

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Spring 2014: Good Growing Newsletter

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