Dr Goldstein, Maureen Boyle, Dr Jana
Maureen A. Doolan Boyle, Executive Director of MOST (Mothers of Supertwins) was recently in Washington, DC representing families of multiples & preemies. Here is her report.
Since 1987 I have had the honor and opportunity to support and represent families of multiples and preemies with MOST (Mothers of Supertwins) on a national platform through different educational and advocacy efforts. In 2005 MOST and PreemieCare (a Division of MOST), along with 13 other leading national professional organizations including the American Academy of Pediatrics (AAP) and the National Association of Neonatal Nurses (NANN) were asked to be a part of the inaugural summit of the Preemie Health Coalition which would later become The National Premature Infant Health Coalition (NPIHC). We were one of only 2 organizations asked to the table to represent the families of babies born preterm. (The other organization was Family Voices.) This was not only an honor and opportunity, but also carried a very heavy responsibility to make sure that the voices of the FAMILIES of premature infants were heard. We have been privileged to continue to be a part of this coalition’s steering committee ever since.
Judy Meehan
On June 14, 2012, the steering committee of NPIHC, led by Judy Meehan of NHMHB, met once again in Washington, DC to renew and solidify their commitment and focus to promote lifelong clinical, health, education, and supportive services needed by premature infants and their families. The NPIHC vision is for premature infants and their families to have the services and support they need for quality care and optimal health and wellness throughout the life span.
The following day at the NPIHC Annual Summit – Connections 2012 keynote speaker, Nils Bergman, MD, MPH from South Africa spoke about Kangaroo Mother Care within the context of an ecobiodevelopmental model; in layman’s terms, how important skin to skin contact is for a premature infant’s overall health and brain development. A main focus of the summit was discussion related to developmental care of the premature infant , emerging research and resources. Each of the speakers offered valuable information for all professionals working with families of babies born prior to term. MOST member and co-founder of the Zoe Rose Foundation , Keira Sorrells, shared her experiences as a parent of triplets born under 26 weeks gestation, the loss of her precious daughter, Zoe Rose, and the continued challenges for parents of preemies after leaving the NICU. She spoke about the phases of the preemie parent experience: shock, numbness/anger, settling in then becoming involved and bonding. I believe that Keira’s eloquent delivery of her perspective was extremely well received and I thank her for her continued support of MOST and our families through her work outside of our organization. Other extremely knowledgeable and interesting speakers included Laura Jana, MD who read from the CDC’s book on developmental milestones “Amazing Me- It’s Busy Being 3!” (Available as a FREE download).
Heather Spohr
Interestingly, Dr. Laura Jana is an identical twin and her sister, Ellen Levy, PhD was also a presenter discussing the role of social media and networking opportunities. Another parent/speaker that moved and inspired many of the attendees was Heather Spohr , writer, award winning blogger and president and co-founder of Friends of Maddie which provides support to the families of critically ill babies in an effort to help ease the transition into NICU life and to be an ally until the end of their child’s hospital stay.
Once again, I came away from the NPIHC Summit with a renewed commitment and anticipation of all that is possible AND necessary in helping the premature infant throughout his/her lifespan – not just within the NICU. It is SO important for others to know that issues related to prematurity can last a lifetime. Proper medical care, services and support for families along with continued developmental assessment and easy access to Early Intervention services are key to minimizing the impact on the child, family and society as a whole! Personally, I see one of the biggest hurdles for not only this group but also our nation is Early Intervention assessment and access. Hopefully in this coming year we will be able to make some headway in understanding what will be involved in order to get past this.
If you are a professional involved in Early Intervention services in your county/state and would like to share your thoughts on how we might be able to make this happen I would LOVE to hear from you! Feel free to post your comments here or email me (Maureen@mostonline.org) directly. Thank you!
Resources on MOST or PreemieCare:
MOST FAQ’s about Triplets and More
MOST Family Forums Special Needs (MOST member only for privacy)
MOST Advocacy Policies & Projects
Web Resources:
American Academy of Pediatrics (AAP)
“Amazing Me- It’s Busy Being 3!” (Available as a FREE download)
Sounds like a wonderful experience. Thank you Maureen for representing all our MOST members who have experienced the challenges of premature birth, NICU care, developmental delays, therapies, health challenges, and/or neonatal loss due to prematurity – and the joys and blessings of parenting our wonderful preemies. There is a lot more to be learned about preventing preterm birth, and about supporting those preterm babies through the NICU, childhood and into adulthood.