Healthcare for PreemiesAmy E. Tracy
Pediatricians and Specialists
To help you coordinate your baby’s follow-up care, you’ll need a pediatrician with whom you can communicate and whom you trust. This primary doctor should ensure that specialists are updated on your baby’s health. You also need a doctor who has experience in preemie care, says Dr. Judy Bernbaum, director of the Neonatal Follow-Up Program at Children’s Hospital of Philadelphia. “In this day and age of managed care, a doctor’s time is limited, so you need someone who can recognize needs quickly,” she says.
If you live in a metropolitan area with one or more busy NICUs, your baby may be followed up with at a specialty clinic that houses some (or all) of the specialists your preemie needs. There are more than 60 of these one-stop shops for preemie care in the United States. You may have the option to have your baby seen for regular follow-up care or on a consulting basis in conjunction with your pediatrician.
Frequency of doctors’ visits will depend on your baby’s individual needs, but you’ll find your calendar full for at least the first year.
Research shows that babies born nine or more weeks before they’re due or with birth weights at 3 pounds or less are more likely to develop an eye disease called retinopathy of prematurity (ROP). Caused by an abnormal growth of blood vessels in the retina, ROP can lead to mild or severe eye or vision problems. In most cases, ROP is diagnosed within six weeks of birth during routine hospital exams. According to Dr. Nieca Caltrider, a pediatric ophthalmologist in Colorado Springs, most ROP resolves by itself or stops with treatment.
If ROP was diagnosed in the hospital, plan for ongoing follow-up exams with a pediatric ophthalmologist until the condition is resolved. If ROP progresses and the blood vessels move outside of the retina, surgical treatment may be necessary. Evaluations for potential problems caused by ROP, such as nearsightedness and amblyopia (lazy eye), should also be a part of routine checkups.
Most hospitals screen an infant’s hearing before discharge; however, if your baby wasn’t tested, request a hearing evaluation immediately. Babies born early are at risk for hearing loss. Also, be on the lookout for ear infections that could cause hearing loss. Signs include fussiness, rubbing or pulling the ears, drainage from the ears, trouble sucking, poor appetite, fever, and temporary hearing loss. Preemies who were on a ventilator, who have frequent colds, and who have a family history of ear infections are at greater risk.
If a hearing loss is diagnosed, your baby will most likely see a pediatric audiologist. Your child’s speech and language development should also be monitored. If a loss has not been detected, watch for signs of hearing difficulties (not responsive to sounds, delay in babbling, starts cooing or babbling and then stops), and report any concerns to your doctor.
Lung-related illnesses are the most common medical problems in preterm infants. “About 40 percent of preemies are re-hospitalized for a respiratory illness within the first year of homecoming,” says Diane Eastman, a pediatric nurse practitioner at the High-Risk Infant Follow-Up Program at the Children’s Hospital of Iowa. That’s because preemies, particularly those born very early and very small, don’t have normal, healthy lung tissue that fights off viruses, she says.
Preemies are also at risk for contracting two serious respiratory infections: respiratory syncytial virus (RSV) and influenza (the flu). Your pediatrician will want to see your baby at the first signs of a cold (runny nose, irritability, or coughing). Early and aggressive treatment of colds is typical. You may need to stay away from public places during cold season or until your baby is healthier and bigger. Your doctor also may prescribe preventive treatments for RSV and the flu.
Picking a Pediatrician
Here are some important questions to ask when selecting a pediatrician for your premature baby, adapted from Your Premature Baby and Child: Helpful Answers and Advice by Amy E. Tracy and Dianne I. Maroney:
- What experience have you had caring for premature infants or multiples? Ask specifically about conditions your preemie has.
- How are the preemies and multiples you’ve cared for doing today? Be wary if the doctor says they are all doing fine: Most preemies have some difficulties, and you want a doctor who will be open and honest.
- What requirements do you have for referring patients to specialists or therapists? A good doctor will not be afraid to make referrals for difficult or unusual cases.
- What hospital do you use? You’ll probably feel more comfortable returning to the hospital where your baby (or babies) were born or to one with a special emphasis on high-risk infants.