When a family gives birth, life changes in an instant. New joy, new challenges, new responsibilities -- it's a beautifully exhausting whirlwind. When a family gives birth to a premature baby, life also changes instantly. But the challenges are infused with confusion and uncertainty, and the joy is fraught with fear and stress. Giving birth to a preemie is not the "standard" entrance into parenthood, and yet it happens to 15 million babies annually around the world (1 in 10). One of the biggest challenges for parents of a premature child is the lack of access to knowledge about health care choices for their new -- and often medically fragile -- baby. Pebbles of Hope, a non-profit organization that creates and provides prematurity education and training for parents and professionals, is working to overcome that challenge.
"There's no manual for prematurity," says Cheryl Chotrani, executive director and founder of Pebbles of Hope, "but there is so much to know. Making decisions on treatment and medication, finding access to specialists, how to protect your child once you bring him home -- it's overwhelming to say the least."
Chotrani created Pebbles of Hope after her son Nathan was born at just 24 weeks. He weighed 1lb 2oz and experienced multiple complications, and procedures during his 140 day NICU stay (read Nathan's full story here). Fortunately, Nathan not only survived his prematurity, but is now a thriving two-year-old and expected to follow typical, healthy growth. Chotrani attributed her son's positive outcome to being born in a leading-edge facility along that allowed for access to newer treatments. She created Pebbles of Hope with the idea that all babies, regardless of where they are born, should have access to the same high quality of care, which can be achieved by better resources and education for parents. Different than other prematurity resource organizations, like March of Dimes and others who provide information on prematurity prevention and emotional support for parents, Pebbles of Hope focuses on what happens after preemies are born and on how to actively seek the best health outcome for baby.
Pebbles of Hope offers a free, interactive online class (also available on CD-ROM) to parents and caregivers of preemies called "Thrive Guide," which is designed to teach the techniques that provide effective care and promote proper development of babies. The guide includes expert information, instructional videos, and parent testimonials. The first module covers nutrition, breastfeeding, and Kangaroo Care (also known as "skin-to-skin" care). The second module will launch later this month. The course is distributed to parents through hospitals, medical professionals, during at-home visits, and can also be downloaded for free on the Pebbles of Hope website. The course is hosted by Udemy, the world's largest online class platform. Pebbles of Hope also offers additional video resources on topics like allergies and food sensitivities, and understanding the premature gut.
As for other sanity-saving advice for parents of preemies, Chotrani has the following gems of wisdom to share:
- Accept all the help and support you can get
- Get to the hospital every day that baby is in the NICU, if you can
- Ask questions of everyone -- learn as much as you can, and work to understand the facts and be informed
- While there are many things out of your control, focus on the things you can do, like pumping breastmilk and providing Kangaroo Care
Pebbles of Hope is currently partnered with hospitals in the United States, but plans to grow internationally in the future. Currently, they are working on a mobile app that will connect parents to prematurity experts. For more information or to download free resources, visit PebblesOfHope.org.
Photo reprinted from "Nathan's Story," courtesy of Pebbles of Hope