Living With Bronchopulmonary Dysplasia

A baby with bronchopulmonary dysplasia (BPD) may continue to have problems after he or she leaves the hospital. He or she may:

• Continue to need extra oxygen.
• Need to use a breathing machine throughout early childhood.
• Be more likely than other infants to get colds, flu, and other infections. This includes viral infections. These infections are usually mild in other children but can be life threatening in babies who have BPD.
• Have a greater chance of developing complications from the most common childhood infections. Your doctor may want to put your baby in the hospital for treatment of a respiratory infection, to be safe.
• Grow more slowly than normal during the first year or two of life. Babies who survive BPD usually stay smaller than other children of the same age.

As with most other children, the lungs of babies who had BPD are almost completely grown by age 8. But these children may have some ongoing lung problems, even when they're adults.

Some babies with very severe BPD may develop some long-term problems. These include:

• Poor coordination and muscle tone
• Trouble walking and being active
• Eye and hearing problems
• Frequent breathing problems and infection
• Learning problems

The chances of developing these problems are very low. Parents shouldn't assume that their child will have these problems. If they do occur, parents and families can get information about these problems from the baby's doctors.

Parents can take a number of steps to help their babies recover and grow as normally as possible. These include:

• Call your baby's doctor if you see any signs of respiratory infection. The symptoms include irritability, fever, stuffy nose, cough, changes in breathing pattern, and wheezing.
• Keep your baby away from large daycare centers and crowds to avoid germs that cause colds, flu, and other infections.
• Make sure that no one smokes in your home, and keep your baby away from cigarette smoke, dust, pollution, and other things in the air that irritate the lungs.
• Make sure that your baby and other children get all their childhood shots. Doctors now recommend shots to protect against the respiratory syncytial virus.

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

• 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 the baby in the neonatal intensive care unit (NICU)
• Fatigue (tiredness)

Things you can do to help yourself during this difficult time include:

• Taking care of your health so that you have enough energy to deal with this situation.
• Breast feeding your baby.
• Learning as much as you can about what goes on in the NICU so that you can help your baby during his or her stay there and begin to bond with the baby before he or she comes home.
• Learning as much as you can about your baby's condition and what is involved in daily care so you can ask the right questions and feel more confident about your ability to care for him or her at home.
• Seeking out support from family and friends, as well as hospital personnel. The hospital case manager or social worker can help you plan for your baby's needs after leaving the hospital. The social worker also may be able to help you find a support group in your community.
• Enjoying your new baby, spending as much time with him or her as you can, and looking forward to a happy future.