Once a month, we share a wonderful organization with you that’s dedicated to helping NICU babies and their families – offering you an opportunity to learn more and to give back.
Featured Organization – Hand to Hold
by Kelli D. Kelley
One of my life’s most defining moments came on a hot summer day in 2000 when my son, Jackson, was born by emergency c-section at 24 weeks gestation weighing just one pound and eight ounces. I could not have known then, the extent of the impact this experience would have on my life, but I knew nothing would ever be the same.
Jackson spent four months in the NICU. He endured three surgeries before his first birthday and has received extensive occupational, physical and speech therapies for most of his life. His childhood has been filled with illness, doctor visits, expensive medications and challenges with Sensory Integration Disorder and learning delays. (See my full story.)
A little more than two years after Jackson’s birth, his sweet baby sister was born at 34 weeks gestation. Lauren was a healthy weight, but suffered from a blood disorder. Once again, I was forced to leave the hospital without a baby in my arms. Lauren recovered quickly but has experienced challenges associated with auditory and visual processing disorders that are directly related to her preterm birth.
Although my husband and I were surrounded by friends and family that showered us with cards, prayers, gifts and meals after the birth of our children, I truly never felt so alone. I searched for support groups and participated in online discussions, but still there was a void. I struggled to identify doctors and therapists. I searched for information about preemie health and development. I longed for someone to hold my hand and light my way. Thus came the inspiration for founding Hand to Hold.
Hand to Hold is a national 501(c )(3) non-profit organization dedicated to providing comprehensive navigation resources and support programs for parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications.
On Valentine’s Day, Hand to Hold will officially launch our new NICU Resource Library, an online library designed to provide NICUs with resources that help parents understand and cope with their baby’s NICU stay. Each resource is written with a parent’s perspective in mind and available in English and Spanish. An editorial panel of medical professionals, social workers and parents reviewed each piece to ensure the content is accurate, timely, relevant, and easy to understand.
Help for NICU Parents & Hospitals They Support
We offer a national peer-to-peer support program that matches new NICU parents with trained Helping Hands (NICU graduate parents) who share a similar birth story. Hand to Hold also offers a free, monthly e-newsletter for NICU families and supporters and offers many educational materials online. And, we will soon be launching Facebook Chats where an invited expert will answer questions about the topic of the day. At no charge, Hand to Hold is happy to provide our annual print newsletter, Hand Prints, which is available in English or Spanish to your hospital.
HOW YOU CAN GIVE BACK
There are many ways to give back through Hand to Hold and to become involved:
- We invite parents to share their personal NICU story in our For the Love of Babies campaign. Those that raise $1,000 or more may gift our new NICU Resource Library to the NICU of their choice in their child’s honor or memory. This campaign will fund more online education for NICU parents and extend our NICU Resource Library. It’s a fabulous way to pay it forward to future families.
- Volunteer as a Helping Hand Mentor and provide one-on-one support to a new NICU parent who shares a similar birth experience through e-mail or by phone.
- Become a Hand to Hold Ambassador in your area and introduce Hand to Hold programs, resources and education to your NICU. Contact Tanya at Tanya@handtohold.org for more information.
- Enter your child’s photo and super hero story in Preemie Power, a fun photo and essay contest, this fall! See the super heroes so far.
- Connect with us on HandtoHold.org, PreemieBabies101 blog, Facebook, Twitter, YouTube and Pinterest.