Home after the NICU

• It's normal to feel anxious about bringing your baby home.
• Learn about your baby's condition, medications and care.
• Plan for your baby's ongoing medical care when you are home.

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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.

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

Equipment
Abledata
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
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.

Reflux 
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.

August 2009