Newsletter Fall 2007 Providing Support to Premature Babies and Their Families

Follow-Up Visits

As they grow, all babies, whether born premature or full-term, need to have regular visits with a paediatrician or family physician for check-ups and immunizations. Premature babies will probably need to have more regular and thorough follow-up visits beyond what is usually recommended for most children.

The type of follow-up a premature baby will require depends in large measure on how premature she was and what complications she experienced immediately following birth and during her hospital stay in Neonatal Intensive Care Unit (NICU). Some premature babies will see their primary care physician, a paediatrician, or the family doctor, and may be referred to an outpatient clinic at the hospital if the need arises. Others will require frequent visits to a neonatal follow-up clinic to assess growth and development as well as the regular check-ups with their doctor. Follow-up clinics are held in both the tertiary care hospitals and some community hospitals

Extremely premature babies who required weeks in the NICU will likely require follow-up visits in the tertiary care centre as they may also have to be seen for other subspecialty service consultations. The follow-up clinic will do their best to ensure that they schedule coordinated appointments.

The purpose of follow-up visits

Neonatal follow-up clinics are primarily for the surveillance of the baby’s progress in terms of her growth and development. In general, visits to a follow-up clinic are scheduled at four, eight, 12, 18, and 24 months corrected age, meaning the age of the baby if she had been born at the expected time. Extremely premature babies and babies who endured more serious complications may be followed more frequently and for longer periods of time.

Follow-up visits are also done in an effort to identify potential problems as early as possible. Since the long-term effects of some injuries and complications common to premature babies are reasonably well anticipated, regular follow-up visits provide an opportunity to identify these potential problems as they develop. This allows for intervention at the earliest possible moment. It is known that long-term implications of many complications common to premature babies, especially those affecting the brain, can be minimized by early therapy and other early interventions.

Outcome studies

Often, premature babies are followed in the interests of science, advancing knowledge with the potential to improve the health and well being of premature babies yet to be born. Because not all long-term implications are completely understood, follow-up visits with assessments of a baby as she grows can let the staff at the hospital, and indeed the whole medical community, better understand problems and their early warning signs. Follow-up assessments can help the medical community determine what interventions and therapies work best to help premature babies as they grow into children. 

To that end, you may be asked to enrol your premature baby in what is called an outcome study. In the simplest possible terms, this means that your baby will be followed and regularly assessed in an effort to determine what types of long-term complications, or outcomes, can generally be expected of all babies born in similar circumstances and with similar complications.

It should be remembered that much of what goes on in the NICU is new: the technologies and techniques used to support premature babies did not exist in past decades. By participating in an outcome study, you and your baby will be helping to advance knowledge for the benefit of others. Additionally, by sticking to a routine of frequent and regular follow-up visits for the purpose of an outcome study, you can be confident that any possible problem your premature baby may encounter later on in life will be spotted immediately, and proper therapy can begin right away.

Following up specific complications

While many, if not most premature babies leave the NICU to develop into completely healthy young children free of complications, some do not. Premature babies who have had certain surgeries or who were treated for specific complications that must be either managed or closely monitored, will require visits to additional clinics.

For example, a premature baby who has undergone cardiac surgery will likely have to be assessed at regular intervals. This will ensure that either the problem has been solved or will indicate that additional measures may need to be taken as the baby grows into childhood. Depending on the complication and its severity, some babies who leave the NICU will have to followed up throughout their lives. This is not necessarily as dramatic as it may sound; for most, these regular check-ups are simply an opportunity for the family to ask questions and obtain ongoing support. Also, these visits help the physicians to understand patient outcomes so that they are better able to support families in the future with better data and information.

Finding a balance

If it has been suggested that your baby attend follow-up clinics or participate in an outcome study, it is highly recommended that you take this advice. At times, this commitment can be trying for parents, especially if they live in small towns or rural areas. Moreover, as a child develops and thrives, the need for follow-up visits may seem less necessary, or worse, serve as an unpleasant reminder of the child’s initial need for support at birth. Visits may also serve to reinforce a false sense of frailty as the now healthy and thriving former premature baby may be doing remarkably well in fact.

Regardless of parents’ attitude towards the health of their developing child and how follow-up visits influence that attitude, parents should remain realistic and make their judgments based on facts. Follow-up visits will provide the facts that parents need to help bring up a healthy child. It is important that parents encourage their child to the limits of her abilities within the reasonable constraints of safety. Again, follow-up visits will help parents determine what their child’s general limits of ability are and where extra precautions, if any should be taken.

It should be noted that all children get sick; they get colds, stomach aches, ear infections, and growing pains. As these minor ailments begin to occur to a child, parents should keep in mind that these ailments are normal and are not necessarily an indication that a complication previously experienced following birth is coming back.

At the follow-up clinic

In addition to assessing a child’s development and looking out for potential problems, follow-up clinics are also forums for exchanging information. Parents let the clinicians know about their child’s behaviour and clinicians can let parents know what to do about it. Information of this nature can be difficult for parents to absorb; it’s often new and specific, and parents, since they may be worried about their child, can find themselves overwhelmed. Here are a few tips to help make the most of follow-up clinic visits: Start your own file. Write down what is said at the visits and keep a record. This will help create a running commentary on your child’s progress that can be referred to later. Ask lots of questions, even if you suspect that they may not be the smartest questions. No one expects parents to completely understand all of the possible behavioural and physical effects of any condition. If you don’t understand something, ask and don’t feel bad about it. It is better to leave a visit without doubts. Make sure your baby’s regular doctor remains aware of the assessments and recommendations of the follow-up clinics.

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