A Preemie Child
After the NICU, New Roles For Parents Of Children Born Prematurely

By: Allison Martin, MPA; Preemie-Child Listowner

Preemie-child is a email support listserv for parents of children who were born prematurely and are now 4 years or older. Children who are born very prematurely may continue to have disabilities and/or special needs which require attention as they enter school and society. The mailing list brings together this small (but growing) group of families for support as we learn from each other's experiences.

For information please write me, Allison Martin at: 5martin@bellsouth.net
or visit the preemie-child website at: http://www.comeunity.com/premature

One of the biggest aspects of the transition created when you bring your baby home from the Neonatal Intensive Care Unit is the realization that now you are the one ultimately responsible for your child. The feeling of responsibility hits almost at once. It is often triggered again at the first sign of a problem - an apnea monitor alarm, your child’s difficulty with feeding, nightime wakings or the early signs of a cold. The second realization, that you are now also in charge, usually takes a little longer. Over time you become aware that you know your child better than many professionals and yet that you need help in handling your child’s special needs. In order to provide care for a child who has special needs, however long that may be, you now find yourself taking on a variety of roles additional to that of parent. These roles enable you to have effective interactions with professionals in the diagnosis and treatment of the special needs of your premature child. We have found that there are at least eight major roles that parents of children born prematurely fill: Detective, Coordinator, Librarian, Communicator, Monitor, Cheerleader, Teacher, and Nurturer.

1. Parent as Detective.
All parents must play detective at times. They must search for clues to keep up with the mysterious changes children can go through in each developmental stage. However, the parent of a child with special needs often faces an even more challenging task in identifying and treating long term impacts related to prematurity.

Some problems are well known (e.g., cerebral palsy, asthma, autism, learning disabilities) and have a history of treatment and a number of specialists to call upon that meet the needs of many families. Yet even then, each child is unique, and parent detectives may need to evaluate additional information, issues and referrals from doctors, specialists, therapists, and support groups to identify individual problems and treatment.

If your child receives a "label" or diagnosis, your job as a detective is just beginning. Now you will want to focus on finding the best resources for assisting your child. Parents will want to learn as much about the disability or issue as possible, so that they can find the appropriate people to provide support and treatment, set up goals and transfer information, and work with their child themselves. Doctors, specialists, therapists, literature, support groups, other parents, the Internet - there are many sources of information to search through in finding the best way to meet your child’s needs. Not only will the parent invest a lot of time and energy in seeking out information, they must sort through and evaluate what is best for their own child and family.

2. Parent as Coordinator
If the child has many long term needs or issues, a team of experts will play an essential role in addressing these. A good team will prove invaluable to both the child and the family. The team composition depends upon the needs of the child. Members may be a combination of private or public (e.g., Departments of Education, Health, and Welfare) experts and professionals or a combination of both private and public team members. A variety of professions may be represented on the team, such as pediatricians, developmental pediatricians, neurologists, pulmonologists, opthamologists, child psychologists, occupational therapists, physical therapists, teachers, special education teachers, and so on. Parents may need to designate team members, work with them to set priorities, assess progress and change the team composition as the child’s needs change. The parent will also be responsible for much of the information transfer across the team and over time.