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 Website 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

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
Reflux
Vision Impairments


Last reviewed: July, 2013

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 Website 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

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
Reflux
Vision Impairments


Last reviewed: July, 2013