Technological advances in perinatal and neonatal medicine are creating a growing population of infants with special medical needs, both in the hospital and at home. Babies are going home sicker and quicker than ever before. Despite parental training in special care and close medical follow-up, these infants are at significant risk for rehospitalization. A baby born weighing less than 3 pounds, 5 ounces (1,500 grams) has almost a 40% chance of being rehospitalized during the first year of life.
Depending on the underlying disease, statistics are similar for chronically ill or technology-dependent infants. This rate drops to about 10% after the first year.
These statistics are not meant to frighten you. Rather, they are to remind you that your baby may still have special health needs at discharge and that going home, in reality, is just the beginning of a whole new set of challenges for you and your family.
“Tommy was rehospitalized three times during his first year at home. Each time was discouraging and exhausting for the whole family. But now that he’s two years old, and he gets sick less often. I think we’ve turned the corner.”
Common childhood diseases can be potentially life-threatening for VLBW infants, those with BPD or other chronic illnesses, and technology-dependent infants. Immunizing your NICU graduate is an important step in preventing many potentially serious diseases.
Respiratory infections are the most frequent cause of hospital readmission among NICU graduates. They may result in continued need for supplemental oxygen, ventilator support, respiratory treatments, and/or medications for reactive airway disease (similar to asthma). The common cold, which is an upper respiratory infection, may cause your baby significant respiratory distress. Infections of the lower respiratory tract, such as pneumonia, can have the greatest impact on your baby, possibly requiring an extended hospital readmission. Respiratory infections occur more frequently in babies who are exposed to smoking in the home than those who are not.
Feeding difficulties and unmet nutrition needs may also lead to repeated hospital admissions. Your baby may not be meeting his nutritional requirements if he is nippling poorly, burning up too many calories working to breathe, or experiencing gastroesophageal reflux disease. When conventional treatment methods for increasing nutritional intake fail, your baby may be referred to an occupational or speech therapist who is specially trained in oral-motor issues if oral feeding is the problem. If reflux is the problem and is severe, your baby may be readmitted for further evaluation and/or for a surgical procedure called a fundoplication. Optimal nutrition and weight gain are necessary to help your baby fight infections, decrease the work of breathing, lower oxygen requirements, and attain developmental milestones.
If your NICU graduate is on an apnea monitor at home, you may at some point notice more frequent or intense episodes of apnea and bradycardia. Report this trend to your pediatrician immediately. In some cases, a test to check the theophylline or caffeine level in your baby’s blood may be done in your doctor’s office. If the episodes of apnea and bradycardia are severe or are accompanied by other signs of illness, your baby may need to be readmitted to the hospital for closer monitoring, further evaluation, and/or medication adjustments.
Neurodevelopmental problems, vision and hearing impairments, and cosmetic surgeries may also require hospital readmission, especially when your child is older. A child with CP may require orthopedic surgeries to release tight tendons. A child with a blocked tear duct may need a minor surgical procedure to open it up. If your baby has scars from NICU procedures (chest tubes or major line placement), you may want to consider cosmetic surgery when he is older and his medical risks have lessened or resolved.
Your Part in Preventing Rehospitalization
You can’t necessarily control the progress of your baby’s medical recovery, but you can take steps to reduce the risks for rehospitalization. Here are some suggestions.
Providing Adequate Care
Prevention of rehospitalization actually begins before discharge as you learn about your baby’s special care needs. Ask questions and practice until you feel comfortable with and competent at providing your baby’s care. Speak up if you have questions or feel that you are being hurried out the door. It’s normal to feel somewhat apprehensive when your baby first comes home, but it helps to know that you are familiar with your baby’s care and understand how to monitor for potential problems.
Working With Your Health Care Provider
Selecting a health care provider who understands the complex needs of a NICU graduate also helps prevent rehospitalization. Weekly visits to the office may be necessary for the first month to monitor your baby’s weight gain and general progress and to address your questions and concerns. Early identification of illness and good communication with your health care provider can prevent a minor illness from turning into a major hospitalization.