After the NICU resources

The March of Dimes realizes that going home from the neonatal intensive care unit (NICU) doesn't mean that you've left the experience behind. Often the excitement of going home also entails leaving the professional and parent-to-parent supports that you have developed while in the NICU.

But there are many resources and organizations that can continue to serve you when you are home with your child. Whether you need parent-to-parent support or information on specific conditions that your child has developed as a result of his prematurity or other medical condition, the following list provides some important resources.

Parent-to-parent resources

March of Dimes Share Your Story
An online community that serves NICU families. Share your story, participate in online discussions, meet other NICU families.

Family Voices
Advocacy and information for families of persons with special needs. State and regional coordinators. Parent-to-parent support. (888) 835-5669.

Support and advocacy organizations for families of children with special needs

ARCH National Respite Network and Resource Center
Provides respite or breaks for caregivers who are taking care of children or adults with disabilities.

National Dissemination Center for Children with Disabilities (NICHCY)
Provides information on disabilities and lists of resources available by state. English and Spanish. (800) 695-0285.

Prematurity-related resources

Children's Disabilities Information
Web site with extensive information on developmental problems associated with prematurity.

Emory School of Medicine, Developmental Progress Clinic, On-Line Resource Center
A comprehensive Web site that provides information for parents after the NICU.

National Early Childhood Technical Assistance Center (NECTAC)
Provides information on early intervention services and special education preschools. (919) 962-2001.

New Visions
Provides a broad range of information on feeding problems. (804) 361-2285.

Preemies: The Essential Guide for Parents of Premature Babies, by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, M.D. (Pocket Books, 2000). Chapters 7 and 8 address practical and emotional issues that arise immediately after leaving the NICU and for a few years afterwards. To order this book, click here.

Touchpoints: Your Child's Emotional and Behavioral Development, by T. Berry Brazelton (Perseus Books, 1994).

Prematurity-related medical conditions

Cerebral Palsy
United Cerebral Palsy Association
For information and support regarding cerebral palsy and related disabilities. Has local chapters. (800) 872-5827.

Easter Seals
Provides a variety of services and support to assist individuals with disabilities and their families. State/local chapters.
(800) 221-6927.

Provides information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States. (800) 227-0216.

Hearing Impairments
Alexander Graham Bell Association for the Deaf and Hard of Hearing
Provides information and support center for pediatric hearing loss and the auditory approach. Local chapters. (202) 337-5220.

American Speech, Language and Hearing Association
Provides local referrals to pediatric audiologists and language pathologists. (800) 638-8255.

Pediatric/Adolescent Gastroesophageal Reflux Association (PAGER)
Provides information and support regarding reflux. No local chapters.

Vision Impairments
The Association for Retinopathy of Prematurity and Related Diseases (ROPARD)
Provides information and resources regarding retinopathy of prematurity (ROP) and related conditions. No local chapters.

Lions Clubs International
Is committed to sight conservation through local efforts. State/local chapters. (800) 788-2020.

July, 2013

Most common questions

How do I calculate adjusted age for preemies?

Chronological age is the age of a baby from the day of birth. Adjusted age is the age of the baby based on his due date. To calculate adjusted age, take your baby's chronological age (for example, 20 weeks) and subtract the number of weeks premature the baby was (6 weeks). This baby's adjusted age (20 - 6) is 14 weeks. Health care providers may use this age when they evaluate the baby's growth and development. Most premature babies catch up to their peers developmentally in 2 to 3 years. After that, differences in size or development are most likely due to individual differences, rather than to premature birth. Some very small babies take longer to catch up.

Is it OK to invite people over after leaving the NICU?

Babies who've been in the newborn intensive care unit (NICU) are often at higher risk of getting an infection than other babies. Be careful where you take the baby and who comes to visit her. But you don't need to stay in your house alone for the first months after your baby comes home.

If you do have visitors, make sure they wash their hands before touching the baby. Also, don't let adults or children who are sick, have a fever or have been exposed to an illness near her. Lastly, ask visitors not to smoke in your house.

My baby has developmental delays. Where can I find help?

Some babies leave the newborn intensive care unit (NICU) just fine while others may have developmental delays. The earlier these delays are identified and treated, the more likely your baby will be able to reach his potential later in life. Most NICU babies will be evaluated before leaving the NICU to see their strengths and any areas that can be improved. If you think your baby has developmental delays, talk to his health care provider about where to find early intervention services. Contact state and local programs for help.

©2013 March of Dimes Foundation. The March of Dimes is a non-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).