Respiratory Distress Syndrome - Living With - Living With

Your baby may need special care after leaving the NICU, including:

• Special hearing and eye exams
• Speech or physical therapy
• Specialty care for other medical problems caused by premature birth

Talk to your child's doctor about ongoing care for your newborn and any other medical concerns you have.

Newborns who have RDS may have health problems even after they leave the hospital. These include:

• Delayed growth during their first two years. Children who survive RDS usually are smaller than other children of the same age.
• Increased risk for infections, such as colds and the flu. If these children develop respiratory infections, they may need to be treated in a hospital.
• Lung problems throughout childhood and even into adulthood. These problems can include underdeveloped lungs and asthma.
• Need for ongoing oxygen therapy or breathing support from NCPAP or a ventilator. A pulmonary specialist may help with your child's long-term care and make treatment recommendations.
• 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 RDS may need help from a specialist to learn how to swallow correctly.
• Apnea, 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 (GERD), 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 newborns who are very small at birth.

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

• 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.
• Do not smoke in your home. Keep your baby away from substances that could irritate the lungs, such as cigarette smoke.
• Get recommended childhood vaccines.
• Treat complications of RDS. Your doctor may give your child antibiotics for infections. Treatment for patent ductus arteriosus, a possible complication of RDS, includes medicines, catheter procedures, or surgery.
• Call your child's doctor if you see any signs of respiratory infection. These may include irritability, fever, stuffy nose, cough, changes in breathing patterns, and wheezing.

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

• Emotional distress, 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
• Frustration that you cannot breastfeed your newborn right away. You can pump and store your breast milk for later use.

You can take steps to help yourself during this difficult time.

• Ask questions about your newborn's condition and what is involved in daily care. This will help you feel more confident about your ability to care for your baby at home.
• Learn as much as you can about what happens 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.
• Seek out support from family, friends, and hospital staff. Ask the case manager or social worker at the hospital what you will need after your baby leaves the hospital. The doctors and nurses can assist with questions about your newborn's care. Also, you may want to ask whether your community has a support group for parents of premature newborns.
• Visit your baby in the NICU as much as possible. Spend time talking to your baby and holding and touching him or her.