If you’ve ever had a newborn that’s had to spend time in the Neonatal Intensive Care Unit (NICU)—and about 10 to 15 percent do—you know the stress that’s involved. Perhaps your little one was born premature. Maybe he had difficulty breathing, or jaundice, or needed a blood transfusion. He may have been there a day—or six months. Every baby is different, but it’s never easy.
Fortunately, thanks to today’s technology and trained staff, babies are doing better and better, and the majority of parents can look forward to years of enjoyment of a child that was once so sick. Yet after all those monitors, tubes and tests, it can be a little daunting for all concerned to imagine the baby at home. For this reason, neonatal specialists invariably recommend an early visit with the baby’s primary care pediatrician.
When you think of it, the timing for baby’s first outpatient appointment isn’t unusual; all babies are currently recommended to have a visit within a few days of discharge. This is largely because non-NICU babies are home from the hospital before signs of several potential problems—jaundice and some types of heart disease, for example—crop up. But many NICU grads come home with quite a resume of issues, many of which need to be followed up early. In this blog, we’ll look at some of these and go over how you, with your pediatrician’s help, can make sure your baby is receiving everything she needs.
Some NICU Baby Problems…..
It would be impossible for even a textbook, let alone a single blog, to list every potential problem a special care baby could incur. That said, let’s look at a few issues for which NICU grads often need follow-up:
- Breathing monitors. Some newborns have trouble breathing spontaneously, particularly if premature. Although most are watched in the NICU until this problem resolves, many go home with devices that can monitor a baby’s breathing and heart rate. Many will need a “car seat test, ” monitoring the grad-to-be to make sure her breathing is OK while in a standard car seat.
- Premature babies, babies with kidney problems, and babies who have lost a lot of blood may have iron-deficiency anemia. They may need iron and may need to have blood drawn frequently.
- Brain issues. This is a “catch-all” category for infants that have had bleeding into the brain cavity (much of which gets better on its own, but it needs to be followed) as well as injuries or variations in the brain’s structure. These babies generally need additional testing and specialist follow-up. Most NICU grads, particularly premies, should also undergo developmental screening, which might be done by any one of a number of specialists.
- Retinopathy of prematurity, or ROP, is a risk for premature infants who needed oxygen to breathe. A pediatric ophthalmologist needs to follow these babies.
- Many sick babies have hearing problems. They get a screen as newborns (as do all babies) and may need to be rescreened when older and/or if the initial screen is not normal.
- Special feeding. Premies may need a special fortified formula to grow; breastfed babies may need a powdered supplement to be mixed with breast milk. Other, nonpremature NICU babies occasionally need a formula suited to their condition.
…..and, Some Not-So-Unique Issues
Reminder: NICU grads are newborns too! That may seem self-evident, but remember that at one time or another, they all need the following:
- A screen for certain (mostly hereditary) diseases. This is done in all 50 states, although the diseases tested for vary by state.
- Their vaccinations. Babies commonly get the hepatitis B vaccine at or near birth. If they’re in the NICU 2 months or more, it may be time to give other immunizations.
- Hearing screen. Yes, I mentioned this above, but it’s worth a shout out here as well, as all newborns do need one.
- If the baby was born breech, particularly if female, an ultrasound might be needed to rule out a hip problem.
Sometimes, these “well kid” items can fall by the wayside. The baby may have been too sick to have them done initially. If he has been transferred from one hospital to another, it may not be clear what was done where. Some tests may initially be abnormal (premies, for example, sometimes test falsely positive for hypothyroidism on the newborn screen) and need to be repeated.
Making That Pedi Visit Count
Because the number of things that need follow-up can seem a little overwhelming for the family of a NICU grad, a visit is usually recommended early, and is generally with a pediatrician. Here are some things you can do to help make it go well:
- Bring ALL information the NICU has given you on your baby! You never know what is going to help your pediatrician take care of her, and it can be a little tricky to figure out what is what in the packet you’ve been given. Occasionally I’ve had a parent bring, say, the hospital’s Notice of Privacy Practices or the baby’s footprints, which are, quite frankly, somewhat less helpful than a summary of the baby’s stay.
- If possible, try and leave the hospital with a discharge summary on the baby, or at least have it available on the patient portal which most facilities now have. It is not a given that the hospital will directly share this information with the pediatrician. At the very least, give permission for the hospital to send information.
- Have a list of your appointments. Understand what’s booked and what you still need to call and book (and when). Know whether your insurance needs a referral, realizing that the pediatrician is going to need the diagnosis. “Because the NICU told me to tell you to do the referral” usually doesn’t cut it as a diagnosis!
- As always, have your list of questions ready. If you need help setting things up at home, let your pediatrician know. Most areas have plenty of agencies to help out.
You’ve been through a difficult time. The more you plan for those first few weeks, the better things will go! Your pediatrician is there to help, and by giving some thought to the items above, you can help him help your baby.
