By Jennifer Beatty, MSW, Family Support Navigator and NICU Mom of Two
As you begin the transition to home, you may find yourself balancing many emotions. After all, this is the day you have been waiting for since those two pink lines appeared on the pregnancy test! The delay in coming home due to the NICU stay has made this day even more precious…. and possibly scary! You may be bringing home your bundle of joy with special monitors, medications, dietary needs or just a head full of worries, but regardless, the day has finally arrived. It can be very overwhelming to transition from such a secure environment, with every breath and heartbeat accounted for with help just seconds away, to home where you are solely responsible for this precious and seemingly fragile being. Though you can always contact the NICU or your pediatrician for questions or concerns, another tool that can help with this transition is scheduling an appointment with a High-Risk Infant Follow-up Clinic. These specialty clinics are designed to be a safety net to identify developmental, nutritional and related health problems early to improve the long-term outcomes and coordinate the medical care your baby is receiving.
Why do High-Risk Infant Follow-up Clinics exist?
When babies arrive early or experience difficulties at birth they are at an increased risk for growth, feeding and developmental issues. The High Risk Follow-up Clinic functions much like an outpatient NICU. Your baby is ready to be at home with you, but still needs some special care and attention from a team of specialists. The High Risk Follow-up Clinic provides that transitional care from the NICU to a regular pediatrician.
Who is eligible?
Babies are typically referred to the High Risk Follow-up clinic by the NICU upon discharge from the hospital. Occasionally, a physician may feel a referral is necessary if they see a child with delays that could benefit from the clinic’s services and coordinated care.
What does a High Risk Follow-up Clinic do?
Chances are you will still have a medical home with a pediatrician who sees your baby for their well checks, immunizations and sick visits. However, after being discharged from the NICU, some infants benefit from or require close follow-up and referrals to multiple subspecialities. The High Risk Follow-up Clinic is a specialty office to evaluate, monitor and provide the screenings, assessments, interventions and referrals needed to help each child grow and develop to the best of his/her abilities. They specialize in assisting a higher volume of former NICU graduates and are knowledgeable of the needs of infants born too early, too small or with various medical conditions. In addition, they are able to support and educate parents on the physical, emotional and nutritional needs that are special to each child’s situation.
Who might I see at the clinic?
The care team members have extensive experience in addressing the ongoing needs of families faced with caring for their medically complex infant.
- Board-Certified Developmental Pediatrician – A pediatrician who has completed specialized training in child development and is trained to collect detailed information, to complete a physical examination and to complete tests to measure development to make a diagnosis.
- Nurse practitioner – A registered nurse with special training for providing primary health care, including many tasks customarily performed by a physician.
- Registered nurses – A nurse that has graduated from an accredited school of nursing and has been registered and licensed to practice by a state authority.
- Occupational therapists – Occupational therapists (OTs) assess functioning in activities of everyday living. Pediatric occupational therapy helps children develop the basic sensory awareness and motor skills needed for motor development, learning and healthy behavior, including body awareness, coordination of movements between the two sides of the body, fine motor control and organization, gross motor coordination and self-regulation.
- Social workers – Social workers are trained to provide support for emotional concerns and help identify community-based resources and services for the family.
- Physical therapists – Physical Therapists (PTs) are health care professionals concerned with prevention, treatment and management of movement disorders arising from conditions and diseases occurring throughout the child’s growth. PTs work on strengthening, balance and coordination as well as assess whether a child could benefit from special equipment. If they will, the PT can help the family order it and train them in its proper use.
- Nutritionist – This specialist assesses the nutritional status of your baby and provides recommendations and education to address any nutrition or feeding concerns and to promote general healthy eating habits.
What happens during a visit?
You will typically visit the clinic during the first two weeks to two months after your baby is discharged from the NICU. At the first visit, you can expect to meet with a physician or nurse practitioner, a nutritionist and a social worker. The first visit typically lasts about an hour. The care team will examine your baby and ask lots of questions about how the transition to home is going. This is also your chance to ask all the questions you have come up with over the past few weeks since you have been home. Some typical conversations that might come up during the first visit include:
- discontinuing monitors,
- your baby’s sleep patterns,
- your support systems,
- nutrition expectations,
- self-care techniques, and
- tips for preventing or correcting plagiocephaly.
You will often receive handouts on feeding expectations, activities to do with your baby, and milestones. The team will review your baby’s current progress and any concerns either of you might have.
What is assessed during the initial and follow-up visits?
At these visits, the care team will interact with your baby and ask lots of questions to make sure your baby is meeting milestones according to their adjusted age. In addition to the traditional milestones, the care team will assess their developmental progress, including:
- neuromotor function, which measures muscle strength or weakness,
- physical growth and nutrition,
- language development such as their ability to listen and talk,
- and social interaction skills such as their ability to interact with others or recognize their name.
You may be asked to complete a questionnaire about your baby and the different things he/she is doing and likes or dislikes. The care team will review your baby’s progress with you carefully and discuss any areas of concern or referrals for treatment they feel would be beneficial. You will also receive detailed information about your baby’s growth and shown their progress on a growth chart.
The care team will provide valuable information with you regarding any changes that should be made to their feeding plan, such as the addition of vitamins or fortifiers for calorie intake to help with catch-up growth, if needed. They can help with breast feeding, other feeding options, and advise when to start baby food, finger foods and whole milk. Remember, your little one is on a different schedule and must be handled with care. They may not be ready for baby foods until closer to their adjusted age.
What should our expectations be with meeting milestones?
It is important to remember that milestones are just a guideline for when certain behaviors should occur. Each child will reach them at different times and on their own schedule. It is easy to get caught up in the comparison trap of who’s baby is doing what or how this one is moving along compared to your other children. It is especially important to remember to go by their adjusted age, but also to remember that these milestones will come when your baby is ready. If you are worried about delays, your care team will be able to put your fears to rest and give perspective. Your baby’s care team will keep you informed if they feel there is any issue that should be monitored or tested.
How often and for how long will we continue to visit the clinic?
Follow-up visits occur at different intervals depending on your child’s progress. Typically, they will be seen two to three times per year to ensure their growth and development are progressing appropriately. Depending on your child’s health and development, in general, the visits with the High Risk Follow-up Clinic can continue until your child reaches the age of six.
How do I prepare for the visit?
These visits are jam-packed with important information and can take up to two hours. If possible, try to bring a family member or friend who can help you during the visit so your attention can be focused on the care team and the information they are sharing. It is a good idea to be prepared with a bottle or snacks for the baby and entertainment for any other children if you have to bring them along for the visit. It also helps to bring a list of written questions or concerns you have so you don’t forget to ask while you are at the visit.
Does my insurance cover these visits?
In most cases, the billing works like a standard doctor’s office. High Risk Follow-up Clinics generally accept most managed care plans and will file the claims for you. Your insurance will usually cover these visits as a specialist visit. Most clinics also accept government insurance plans as well.
What kind of referrals might I expect? Are they covered by my insurance?
If the care team feels that specific services are needed, a referral may be made to an outside provider for evaluation and treatment. Depending on your child’s needs, a therapist may come to your home to determine if you may be eligible for home health occupational, physical or speech therapy services through your insurance or a state-funded plan. Additional pediatric specialist referrals that might be considered include the following:
- Audiology for a hearing evaluation,
- Gastroenterology for Reflux or other feeding concerns,
- Lactation for assistant with feeding and maintaining your milk supply,
- Ophthalmology for an eye evaluation,
- Orthotics for plagiocephaly evaluation,
- Cardiology to follow-up on any care from the NICU,
- Neurology to evaluate nervous system function,
- Otolaryngology or ENT for ear, nose and throat issues including frequent ear infections,
- Pulmonology to assess lung function and determine if RSV shots are needed, and
Bringing your baby home from the NICU is a wonderful and exciting step in your journey of parenthood. The High Risk Follow-up Clinic is a great safety net to help you advocate for your child’s heath and well-being.