mom with preemie

Photo credit: Whitaker Family

Help! My baby is in the NICU. What should I do to help my baby, my family and myself?

First of all, it is vitally important to find a support network, and Hand to Hold can help you with this. This fact sheet of 21 NICU survival tips was compiled by Kelli Kelley and was featured in Expecting 411 (p. 572). Preemie Mom and Blogger Kathryn penned these 10 Tips for Surviving the NICU (and you’ll find even more advice from fellow parents who have been in your shoes on our blog.  We also have a Pinterest board full of  helpful tips and articles a family might need while a child is in the NICU. Also consider setting up a free CareFlash community provided by Hand to Hold and CareFlash to send out updates to families and friends to minimize the number of times you give everyone medical updates while also organizing tangible ways they can help you. Lastly, we have a welcoming community of parents online on Facebook, Twitter, and Pinterest eager to get to know you (Find links to all our social media accounts.)

I need someone to talk to who understands. When can I call Hand to Hold?

We welcome you to Hand to Hold’s community of parents. No matter where you are or what you’re going through, there is another parent out there who understands – because they’ve been through it, too. If you have a question, want to talk to discuss an issue with another parent, or simply need to hear a friendly voice on the other end of the phone line, contact Hand to Hold. We’ll be here for you no matter where you are in your journey.

Call us if you are:

  • Starting a high-risk pregnancy
  • On bed rest
  • Mourning the loss of a baby
  • In the NICU
  • Leaving the NICU
  • Experiencing complications
  • Receiving a new diagnosis
  • Considering a new surgery or intervention for your child
  • Facing re-hospitalization
  • Having questions about your child’s development
  • Wanting to know how to support siblings

Or you are feeling alone. Because you’re not alone. We’re here and we’re ready to offer a Helping Hand.

How can I help a family member or friend during a NICU stay or after a loss?

Check in often. Volunteer to cook a meal, clean the house, watch a sibling or wash clothes. Listen to your friend or family member and offer them your love and support. You can also refer them to Hand to Hold to receive a Helping Hand match or even donate in their name. Here’s a fabulous article with 10 Tips for What to Do and How to Help when a friend or loved one has a baby in the NICU.  We have a whole pinterest board of ideas for how to help friends and family in the NICU, and another board specifically devoted to memorial and bereavement.

What is a Helping Hand?

Helping Hands are seasoned parent volunteers who have had a premature child, have had a child with a special health care need or have experienced a loss and who are willing and able to assist other new parents facing similar circumstances. Once trained, Helping Hands serve as peer mentors to provide emotional support and resources.

Does Hand to Hold match only parents or can caregivers also find a peer match?

Hand to Hold’s core service is the peer-to-peer match, so that every parent has a hand to hold as they care for their NICU baby or grieve a loss. However, these services are valuable for any caregivers, and we can match relatives, grandparents, and legal guardians.

Who is eligible to volunteer as a Helping Hand?

We are looking for parents and caregivers who have had a preemie, have had an infant born with a special health care need or have experienced a loss. Helping Hands should also have three to five years of experience as parents after a NICU experience. We find that a Helping Hand will be able to provide more assistance if some time has passed since the birth of their child. If your NICU experience is recent, you may better benefit as a recipient of Hand to Hold’s programs and services.

What kind of training do Helping Hand volunteers receive?

Volunteers who want to serve as Helping Hand mentors receive training to better understand the difference between peer support and a professional counselor, to recognize signs of depression and post-traumatic stress disorder, to identify when a peer needs professional support, to hone listening skills and to encourage self-care for themselves and the person they are helping. Helping Hand volunteers also go through a background check. Read more about how to become a Helping Hand.

Does Hand to Hold and its volunteers ever give medical advice?

No. Hand to Hold is designed to support parents and caregivers by lending an ear, sharing resources and providing emotional support. They are by no means a substitute or replacement for care by a physician or therapist. Volunteers and staff are specifically instructed not to offer medical advice.

What is the time commitment like for Helping Hand mentors?

The time commitment varies when Helping Hands are matched with peers. Once you meet your peer, you both can decide when, how often and for how long you will correspond. It could mean phone calls each week, corresponding via text or social media, regular emails or it could mean waiting in a reception area holding their hand as their child goes through surgery. Both the Helping Hand mentor and peer decide what level of support is best for them.

Are there other volunteer roles available for parents?

Yes.  Parents can meet others through periodic parent socials and coffee hours, NICU Support Group, Sibling Support Events and other volunteer opportunities come up such as volunteering for hospital-specific NICU reunions and other events where we can reach more parents who may benefit from Hand to Hold’s community of committed parents. You can also connect with fellow parents and ask questions on our NICU parent forum Life After NICU, and mark your calendar for our monthly online chats with experts. Find out more ideas on our Volunteers page. Contact our family support team, at support [at] handtohold [dot] org for the latest information or call us.

Can health care professionals be involved?

Absolutely, we welcome the participation of health care professionals.  Help us spread the word to parents you know who could benefit from peer-to-peer support.  We also now offer a NICU Resource Library for hospitals by subscription to complement a hospital’s family-centered care initiatives. Visit our Health Care Professional page to learn more.

Does Hand to Hold charge for services provided to parents and their families?

No. Hand to Hold is an independent nonprofit 501(c)(3) organization and raises money from individuals and organizations to cover these services and education for the benefit of Hand to Hold families.

What organizations support advocacy and research to prevent premature birth?

The March of Dimes is a national organization which raises money to fund advocacy, awareness and research to improve the health of babies by preventing birth defects, premature birth and infant mortality. The Eunice Kennedy Shriver National Institute of Child Health and Development also funds research in this area. Preemie Voices provides legislative information, policy and news related to prematurity. Baby First provides clinical education and support for parents also. Find more organizations on our interactive Resource Directory.