I was honored to be able to attend the inaugural annual meeting for the National Prematurity Infant Health Coalition this week. I went as a representative for the Mississippi Perinatal Association and of course for the Zoe Rose Memorial Foundation. This is an effort to revitalize a coalition that had formed in 2005 by over two dozen stakeholders in maternal and child health. The original group was formed with a grant from MedImmune and was successful in doing a physician “gap” analysis to identify educational needs of parents affected by prematurity as well as producing a wonderful NICU journal for parents, now available for print. You can read more about their accomplishments on the NPIHC website.
The AAP originally handled the administrative duties of the coalition and thanks to a recent grant from the AAP, National Healthy Mothers, Healthy Babies Coalition is now leading the effort. The attendees at the meeting covered a wide array of professionals and parents working towards healthier pregnancies, better birthing outcomes, and support for families with premature babies. These organizations included, but were not limited to, the American College of Nurse-Midwives, Mothers of Super Twins, Mothers & Babies Perinatal Network, March of Dimes, PreemieWorld LLC, MedImmune, US Dept of Health and Human Services, Preemies Today, American Optometric Assoc., National Assoc of Pediatric Nurse Practitioners, National Perinatal Assoc., First Candle/SIDS Alliance, Infant Massage USA, and a number of hospitals and universities across the country. It was an educated, passionate group to say the least and I was thrilled to be a part of it.
As this was the Coalitions first organizational meeting there was discussion about what the official name of the Coalition will be, and how we will organize and communicate. We also listened to a wonderful presentation by Mary Harris, PhD, RD of Colorado State University who specializes in Prematurity Prevention & Nutritional Science and whose current studies are showing how important the intake of Omega-3 fish oils are for decreasing the incidence of preterm birth. She also stated that there is accumulating evidence that Vitamin D may be protective against preeclampsia, the most common cause of preterm birth. Vitamin D is a very common deficiency among pregnant women, an estimated 50% of pregnant women in the US have such a deficiency. Very interesting research to say the least! She also discussed the importance of proper weight gain throughout pregnancy and how much being underweight and overweight is associated with an increased risk of preterm birth. I could have listened to Mary speak all afternoon. Her work and her passion was fascinating.
We also heard from Sharon Chesna, MPA, of Mothers & Babies Perinatal Network in New York. Sharon is the past president of the National Perinatal Association and someone that I have spoken with and emailed on several occasions over the last 18 months (since the inception of our foundation). I was thrilled to be able to meet her in person for the first time! Both she and Liz Shawen from the Florida Alliance for Healthy Babies shared strategies that have worked to make their regional networks successful both for parents and in affecting legislative change.
We also learned of a website developed by MedImmune, called Preemie Voices, which is a compilation of current legislation that impacts the care of premature infants. It also has a free advocacy tool kit that is in pdf form and can be downloaded. This tool kit is chock full of great information with everything from prematurity statistics in the US, to working with insurance companies, to advocating your cause through the media, and working with elected officials. This is a wonderful, must have resource for anyone who has anything to do with advocating for preemies and their parents.
Overall, it was a wonderful meeting, full of wonderful people (I finally got to meet my mentor, Maureen Doolan Boyle the founder of Mothers of SuperTwins), and I am really looking forward to working with the group. I am kind of a “processor” so it takes me a few days to analyze everything I heard so I have just now given my feedback, from a parent’s perspective, and hope to add a few items to the list of things the coalition hopes to accomplish. One of those being a way to eliminate the gap in support between leaving the NICU and transitioning home. I am also hoping to work towards “standards of care” recommendations for end of life family support and “best practices” when an infant dies in the hospital. Another point I raised was the possibility of creating some source of support or resources (not necessarily financial) for parents who run parent support groups for families in the NICU and beyond. There are so many grass roots efforts around the country, wouldn’t it be great to bring these groups together to share ideas and materials. No need to reinvent the wheel if something out there is working really well for a group in one part of the country, right?
So I will definitely keep you updated on the progress of the Coalition. If you are a parent who has a support group or if you are a parent who would like to be involved in some way please do not hesitate to email me at firstname.lastname@example.org and I will do whatever I can to hook you up with the right people.