Here in the United States, around 450,000 babies are born prematurely each year. That’s 1 in 9 babies born early – a truly stunning statistic. Premature birth is linked to severe health problems in babies and lifelong disabilities.
Austin mom Kelli Kelley knows the challenge parents of a premature child face firsthand. Kelli’s first son, Jackson, was born 16 weeks early and her daughter, Lauren was born six weeks premature. After realizing the incredible challenges that families face after leaving the NICU (neonatal intensive care unit), she founded Hand to Hold, an organization dedicated “to provide comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications”.
We first wrote about Hand to Hold in 2010 and have been blown away by all the organization has been able to accomplish in such a short time. In the article, Kelli reiterated the need for Hand to Hold. “Most parents are blindsided by the emotional, financial and psychological fallout of caring for their children.”
November is Prematurity Awareness Month, which seems a fitting time to recognize the group’s latest achievement — the launch of the NICU Graduate Handbook – Central Texas Edition, a guide for parents leaving the NICU to educate parents about their baby’s unique developmental and health care needs, giving them the tools and information they need to partner with their therapists and health care providers to ensure best outcomes for all babies. In addition to providing information, the Handbook hopes to help parents be advocates for their children as they identify health care specialists to provide follow up care.
Imagine the haze of leaving the hospital, and in addition to the chaos that is life with a newborn, having different milestones, challenges, concerns and questions. This guide, which is currently provided free of charge to patients in the St. David’s Healthcare System and the Ronald McDonald House Charities of Austin and Central Texas, gives parents important information they need, along with local resources for additional assistance. Some of the topics covered include navigating the health care system, choosing baby gear, feeding, finding health care providers and even getting your little one home from the hospital safely. In addition to receiving the Handbook at these local hospitals, parents will soon be able to purchase it off the Hand to Hold website.
In addition to the NICU Handbook, Hand to Hold offers families of preemies:
- parent and family mentors to provide new parents the chance to ask personal questions and receive support from someone uniquely familiar with the experience of pre-term birth.
- sibling support to help meet the need of older brothers and sisters
- an online support group, Life after NICU, to provide families a chance to connect and receive resources and support on Facebook
- NICU support and parent socials for families to come together in the hospital
- Grief support for families who have suffered a loss
- free patient webpages to keep friends and families up-to-date on your child or children in the NICU and beyond
- a community of parent bloggers who share similar experiences
Thanks to Hand to Hold, these little guys and girls who are entering our wonderful city a little bit early are in good hands.
[author] [author_image timthumb=’on’]http://www.livemom.com/wp-content/uploads/2012/09/Nicole-Basham-Sara-Marzani-Photography-livemom.jpg[/author_image] [author_info]A native Austinite and soccer-playing mom, Nicole uses her 8-year-old son as an excuse to rediscover her hometown through his eyes. In Thoreau’s words, her mission is to “suck out all the marrow of life”, or in her son’s words, to cultivate in him a love of “advenchers”.[/author_info] [/author]