Preemie Parent Empowerment Project

Parents holding hands in supportThe emotional, physical, financial, psychological fallout of caring for a medically fragile child often blind-sides families. The prolonged stress can have a profound impact on the entire family often resulting in depression, separation, divorce and child abuse. The medical community agrees more must be done to support families, but that support is often missing in many communities.

Hand to Hold aims to support and empower parents during and after a NICU stay. The Preemie Parent Empowerment Project provides vital resources and information to families including peer-to peer-support matching, bereavement support, educational videos, support groups, information about Post Traumatic Stress Disorder and ongoing education about the challenges many preemies face.

Couple discussing their experience with premature birth

Consider the Statistics

  • Researchers have found that parents of premature infants and babies born with special health care needs often struggle with depression, anxiety and post-traumatic stress disorder.1
  • One research study found that 76 percent of mothers who had children in the NICU and who didn’t receive trauma-preventive intervention showed symptoms of clinically significant psychological trauma at discharge, compared to just 36 percent of mothers who did received crisis intervention. This study shows that intervention can significantly lessen the emotional impact of premature birth.2
  • Another recent study found that fathers who were examined four months after a child’s NICU hospitalization “were more symptomatic than mothers in terms of the proportion of these fathers meeting diagnostic criteria for post-traumatic stress disorder.” This study suggests that the father’s emotional response is no less severe than that of the mother.3
  • Even interventions requiring relatively few resources, such as telephone support, parent-to-parent support and group support, have been associated with reduced psychological morbidity for parents.4
“I have been practicing Neonatology since 1972 and direct the Premature Infant Development Program since 1999. We have implemented many programs both in the NICU and the clinic to have parental involvement. I have often thought of the profound effect the birth of a preemie has on the parents. I have seen depression and divorce, child abuse and ongoing health issues. The idea of Hand to Hold blew me away. It is so thoughtful, necessary and urgent to have this  available to all families…”
Rajam Ramamurthy, MD
Medical Director, Premature infant development PREMIEre program
Rita and William Head Distinguished Professor of Environmental & Developmental Pediatrics
UT Health Science Center-San Antonio

How Hand to Hold Helps

Hand to Hold provides navigation resources and support through a variety of programs and services that help families no matter where they are on their journey — in the NICU, during the toddler years, during the school years and beyond.

  • Peer to Peer Support
  • Bereavement Support
  • Support Groups, such as Life After NICU
  • Sibling Support
  • Online Resource Database
  • Comprehensive Website with Educational Information
  • Preemie Babies 101 Blog
  • Family Connection Events
  • Monthly E-Newsletter/ Bi-annual Printed Newsletter (English/Spanish)
  • Education programs (parents, medical professionals)

What Parents Have to Say

Katrina Moline and son Bryce explain the importance of having a peer mentor.

Katrina with micro-preemie Bryce

“I believe in what Hand to Hold does! At a time where you feel isolated from your friends/family H2H offers more than support… Hand to Hold offers understanding, validation, strength and a multitude of resources that are waiting to help you through your situation in the NICU. As a parent with a child in the NICU the comfort of knowing that someone else understands what you’re going through is priceless.”

“I believe that if the community helps take care of families who are dealing with a preemie(s) and all that entails, then those families are better able to take care of their babies…and that helps the entire community.”

“There is no other organization available to support NICU families in the NICU and beyond.  Regardless of why the family is in the NICU, all the families there are scared, isolated, and searching for help. Family, friends and community help, but the ability to lean on someone that has been there and gets it is priceless.  I wish I had Hand to Hold when I was in the NICU.  This is such an important organization.”

“When my son Bryce was born 4 months early I felt like I had no one to turn to.  All of my other friends were having these beautifully healthy babies and here I was sitting in the NICU wondering if my baby would survive.  Finding Hand to Hold has been an invaluable resource for me in my long journey raising a micro-preemie.  Bryce is now almost 2-1/2 and though the questions I need answers to are different and the resources I’m seeking have evolved, the Hand to Hold community is still an important part of my daily life.” Katrina M, preemie mom

Daddy Mike holding Jackson in the NICU“Hand to Hold is a family’s lifeline in the sea of the unknown.  Those mentors understand our fears, frustrations and hopes that no book or medical professional has.  They are the virtual ‘girlfriend next door’ who listens, provides resources and an understanding heart.”

Sources

1 Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. “The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit.” Psychosomatics. 2009 Mar-Apr; 50 (2): 131-7.  and Holditch-Davis D, Bartlett TR, Blickman AL, Miles MS. “Posttraumatic stress symptoms in mothers of premature infants.”Journal of Obstetric, Gynecologic, & Neonatal Nursing. 2003 Mar-Apr; 32(2): 161-71.

2 Jotzo M, Poets CF. Helping parents cope with the trauma of preterm birth: An evaluation of a trauma-preventive psychological intervention. Pediatrics. 2005; 115: 915-919.

3 Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics,  2009 Mar-Apr; 50 (2): 131-7.

4 Marina N, Glazebrook C. Emotional support for families of sick neonates. Paediatrics and Child Health. April 2008; 18(4): 196-199.

Site last updated May 23, 2017 @ 3:00 pm; This content last updated September 27, 2013 @ 1:27 pm