How well will my child do in the long run?

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By Dr. Jonathan Castillo Porter, MD, MPH

Texas Children’s Hospital

Whether it is a woman carrying her third pregnancy or a first time mother now holding her newborn infant, in a hundred different ways parents ask me this question.  They wonder how their child will ultimately function in today’s complex world.

Although there is no simple reply, I am grateful for a team of colleagues who, together with me, will offer all-embracing care and walk along the family’s journey as we discover the answers together.  From maternal-fetal-medicine to internal medicine, this comprehensive team approach to individuals and families whose lives have been touched by spina bifida is what makes a positive impact to their experience.

I’m also blessed by many who contribute to my professional growth both from within my institution and from outside of it. At the forefront of organizations which add value to families by adding value to the professionals who serve them, is the Spina Bifida Association.

For years I have been impressed by the collaborative spirit found among the diverse professionals who attend the SBA’s conferences.  At the last World Congress, the openness and free exchange of innovative ideas I encountered impacted my practice to this day.  I am certain that the upcoming Third World Congress on Spina Bifida Research & Care, starting on March 16, will leave yet another indelible impression on me.

This environment offers a platform for exchange among the international medical and scientific community from the fields of developmental pediatrics, neurosurgery, urology, orthopedics, physiatry, nursing, and many other important arenas.  It foments a sense of community from which collaboration to develop a national research network was born, the meaningful use of an electronic medical record is energized, and it catalyzes the casting anew of guidelines for care of this chronic and complex condition.

In short there are a number of logical arguments why I encouraged others from my institution to attend the Congress.  Yet at times it is the intangible reasons that most profoundly motivate us.

Whether the forging of community or the rekindling of the flame for advocacy, it is the families for whom we care who ought to remain at the heart of the issue.  Knowing that the questions many parents ask ultimately echo with the desire for better neurodevelopmental outcomes and a healthy transition to a meaningful and fulfilling adulthood, we as professionals have a responsibility to remain informed on how to best improve these outcomes. Thus I look forward to another pace-setting Congress.

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A few other resources:

Sawin KJ, Liu T, Ward E, Thibadeau J, Schechter MS, Soe MM, Walker W, NSBPR Coordinating Committee. The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinic. J Pediatr 166: 444-50, 2014.

Merkens, Mark J. Guidelines for Spina Bifida: Health Care Services Throughout the Lifespan. Spina Bifida Association, 2006.

Bowens FM, Frye PA, Jones WA.  Health Information Technology: Integration of Clinical Workflow into Meaningful Use of Electronic Health Records.  Perspect Health Inf Manag. 2010 Fall; 7(Fall): 1d.

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