Hand to Hold's Official Blog: Written by Parents for Parents

{Professional Insight} A Look Behind the Scenes of High Risk Follow-Up

In the United States, approximately 4 million babies are born annually, 11% will be premature and 1% of term infants will require NICU care. Once these babies are born a team of physicians, nurses and many other staff members will work diligently to offer the best care and to have your child go home with your family. This is a major milestone, but only the first of many. An outpatient team will be involved with your child. As a NICU graduate, we hope a High Risk Follow-up Clinic will be a part of the team.

©DepositPhotos.com/nastia1983

©DepositPhotos.com/nastia1983

The American Academy of Pediatrics Committee of the Fetus and Newborn recommend NICU follow up for the smallest(<1000 gm) and youngest of infants (<28weeks). NICU follow-up clinics are a part of many academic and private institutions. California and Arizona and a few other states have a state-mandated program to follow high-risk infants. In Austin, we have Austin’s First Steps (AFS). We follow NICU graduates born less than 34 week gestation, hypoxic ischemic encephalopathy, brain injuries, chromosomal anomalies, and other medical concerns. Patients come to us as a direct referral from any NICU, pediatricians, therapists, and families themselves.

How a High-Risk Follow-up Clinic Works

AFS monitors patients from discharge until 3 years old, but we are proud to announce that our program has expanded. We are partnering with Central Texas NICU Follow-up Program. Dr. Siv Fasci, a Developmental Pediatrician, and her team will be monitoring patients from 3 until 1st grade.

NICU follow-up clinics have common goals distinguished. They are to identify deviations of growth, behavior, and neurodevelopmental status. It is also important to collect information to monitor outcomes. This gives the doctors feedback on NICU interventions. Parents often ask how they can give back to the NICU. By participating in a program such as ours, their child’s progress gives valuable information for the future of care.

At AFS, our visits start shortly after discharge to assess a baseline of the child’s status. This can range from a happy breastfeeding infant to a child requiring oxygen, a feeding tube, and a nurse. We see the children on a regular interval to monitor growth and development. We feel it is important to see the child and their family and build a relationship of support. We do not replace a Pediatrician, but we are another source of support for preemie issues.

Nutrition and growth are a huge component of our visit. It is vital for brain growth that occurs during the first 2 years of life. In the first year of life, the brain’s volume will increase by 101%, and then by 15% in the second year. AFS is lucky to have a dietitian who guides our families with up-to-date information to optimize their child’s nutrition.

AFS performs developmental assessments starting at 2 months adjusted age through the age of 30 months. We do developmental screening and the Bayley III assessment. The Bayley III evaluates the child’s cognitive, language, motor, social emotional, and general adaptive skills. We get to play with the children and observe them showing off their skills. Sometimes, a toddler can really test us with their strong will. We share results with the family and make recommendations based on their performance and physical exam.

Beyond the Basics

In addition, preterm infants have a reported 2 to 5 times greater risk of having Autism. It is important to identify these children early. AFS does Autism screenings at 12, 18, 24, and 30 months. If we have any concerns we will refer them to Dr. Fasci before 3 years old to help the patients and families diagnose a problem and receive appropriate therapy.

Once they are 3 years old, Dr. Fasci follows them. She will continue to assess the children and focus on developmental issues in preparation for school. Preterm infants are at greater risk for behavioral and learning issues; we hope by testing and identifying problems we can give the child and family the tools to succeed.

Working with this special population of patients is rewarding. We often get to share in the many accomplishments of the child. Sometimes we have to discuss problems that we find and it is not always easy. Understanding who each child is and what we can do to find their full potential is a process. NICU follow-up can be a valuable added support to children, families, and providers. It is a privilege to work at Austin’s First Steps and to provide a service to the Austin and the surrounding communities. If you are not in Austin, there may be similar programs in your area, and I encourage you to look into them as a beneficial aid in your child’s development.

GUEST BLOGGER

dr k photoSydney Kometani, MD is a pediatrician with Austin’s First Steps High Risk Follow-up Clinic.  She grew up in Honolulu, Hawaii with a large family and attended the University of Hawaii Medical School. She did her Pediatric training at the UT Health Science Center in San Antonio, Texas and began practicing as a Pediatrician in 1999 on a small island in the Pacific. She returned to Austin in 2002 with her family so that her husband could be back in the land of the Longhorns and practice as a Neonatologist at St. Davids. Sydney has been with Austin’s First Steps since the clinic opened and has witnessed the growth of the practice through the hard work of many people. She enjoys interacting with the patients and feels that the children are truly amazing as they continue to teach her many things about life. In her free time, she is a full-time mother of three children and two dogs. They keep her busy! She also enjoys visiting her extended family in Texas and always finds time for a visit home to Hawaii.

Comments

  1. Cynthia Buhler says:

    My daughter was born premature 32 years ago. (32 weeks, 1230 grs) We were offered the opportunity to be involved in a High Risk Follow up clinic at the University of Washington. Although they didn’t offer the nutritional and other support, at that time the information was valuable and reassuring. They were able to help us with some issues and to know the long list of possible effects of LBW and prematurity could be identified early. It was reassuring to see what her strength’s were as well. I was pleased to read that the follow-up clinics are still going strong.

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