Living With Bronchopulmonary Dysplasia

Caring for a premature infant can be challenging. You may have:

• Emotional pain, including feelings of guilt, anger, and depression.
• Anxiety about your baby's future.
• A feeling of a lack of control over the situation.
• Financial stress.
• Problems relating to your baby while he or she is in the neonatal intensive care unit (NICU).
• Fatigue (tiredness).
• Frustration that you can't breastfeed your infant right away. (You can pump and store your breast milk for later use.)
• Complicated schedules that require you to give your child medicines regularly and keep frequent medical appointments.

Take Steps To Manage Your Situation

You can take steps to help yourself during this difficult time. For example, take care of your health so that you have enough energy to deal with the situation.

Learn as much as you can about what goes on in the NICU. You can help your baby during his or her stay there and begin to bond with the baby before he or she comes home.

Learn as much as you can about your infant's condition and what's involved in daily care. This will allow you to ask questions and feel more confident about your ability to care for your baby at home.

Seek out support from family, friends, and hospital personnel. Ask the case manager or social worker at the hospital about what you'll need after the baby leaves the hospital. The doctors and nurses can assist with questions about your infant's care. Also, you may want to ask whether your community has a support group for parents of premature infants.

Parents are encouraged to visit their baby in the NICU as much as possible. Spend time talking to your baby and holding and touching him and her (when allowed).

Ongoing Care and Health Issues

Infants who have bronchopulmonary dysplasia (BPD) may have health problems even after they leave the hospital. They may continue to need oxygen therapy (oxygen given through nasal prongs, a mask, or a breathing tube) or breathing support from nasal continuous positive airway pressure (NCPAP) or a ventilator.

A pulmonary specialist may help with your child's long-term care and make treatment recommendations.

Infants who need long-term ventilator support may need a tracheostomy. A tracheostomy is a surgically made hole in the front of the neck. It allows a breathing tube to be placed directly into the windpipe, rather than through the nose or mouth.

Babies who are diagnosed with BPD may be at increased risk for certain health problems throughout infancy and early childhood. They may be more likely to get colds, the flu, and other infections, which may be life threatening. If these children develop respiratory infections, they may need to be treated in a hospital.

Babies who have BPD also may have trouble swallowing. This may put them at risk for getting food stuck in their airways. This condition is called aspiration, and it can cause infection. Children who have BPD may need help from a specialist to learn how to swallow correctly.

Babies who were diagnosed with BPD also may have delayed growth during their first 2 years. Children who survive BPD usually are smaller than other children of the same age.

Children who are born with BPD may continue to have lung problems throughout childhood and even into adulthood. These problems can include underdeveloped lungs and asthma. Babies who have very severe BPD also may develop other problems, such as:

• Apnea. This is a condition in which breathing stops for short periods.
• Poor coordination and muscle tone.
• Delayed speech and problems with vision and hearing.
• Learning problems.
• Gastroesophageal reflux disease, or GERD. This is a condition in which the stomach contents back up into the esophagus during or after a feeding. The esophagus is the passage leading from the mouth to the stomach. GERD may lead to aspiration.

The risk of these complications increases in infants who are very small at birth. If your child has BPD, talk to his or her doctor about your child's risk for these problems.

You can take steps to help manage your child's BPD and help him or her recover.

• Call your child's doctor if you see any signs or symptoms of respiratory infection. These may include irritability, fever, stuffy nose, cough, changes in breathing patterns, and wheezing.
• Try to prevent infection. Wash your hands often, and discourage visits from family and friends who are sick. Keep your baby away from large daycare centers and crowds to avoid colds, the flu, and other infections.
• Don't smoke in your home. Keep your baby away from cigarette smoke, dust, pollution, and other lung irritants.
• Make sure that your baby and your other children get their childhood vaccines and other treatments recommended by their doctors.