I Don’t Always Have Spina Bifida

 

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Photo courtesy Macbeth Photography: MacbethPhoto.com
 My life consists of many awesome events…and many funny photos! 

 

 

Yes, I know. That’s quite the inflammatory title.

This is a topic I’ve been reflecting on for a long time. I’ve read many articles and posts on both sides of this argument. I’ve read posts from adults with spina bifida, and parents of children with spina bifida, who say that spina bifida doesn’t define them. 

I’ve also seen the other side of the coin, from parents who say that, indeed, spina bifida defines their children. 

One of the most interesting arguments I’ve heard for the latter point of view is from my friend, Mary Evelyn. Even when I don’t agree with her perspective 100 percent, she always manages to make a very sound, introspective and rational case. I can’t help but agree with her on this– to a certain degree. 

To be sure, even now, in writing this, I am on the fence on this subject.

Mary Evelyn, and all of those who agree with her, is right. To a certain extent, spina bifida will always define me and my life. It’s an integral part of who and what I am. I will never be able to shrug off the years, nay, decades, of how spina bifida has molded me into the person I am. The adult I am. 

But there is another side of this coin, I ardently believe, that deserves equal inspection. There are moments, even days, when I don’t feel like I have spina bifida. 

Do you know what I’m talking about? Whether you have spina bifida or not, perhaps you can relate.

I’m talking about those moments when I’m getting ready to go out, and I’m putting the finishing touches on my outfit– my earrings, my eyeliner, etc. I glance at myself in the full-length mirror, and I see…a beautiful woman. Not “a woman with spina bifida.” Not “a woman who has had several brain surgeries.” Not “a woman who is now struggling with lower back pain on a daily basis.” Not “a woman who has to self-cath every three hours in order to live.”

Just…a beautiful woman. 

When I’m out with my closest girlfriends, and having a glass of sangria or a cup of coffee, it’s not the woman with spina bifida they are out with. It’s the blogger, the social media consultant, the coffeeholic (more often than not), the grammar nazi who is constantly editing other people’s words as well as her own (I seriously can’t help it!).

 

Grammar

 

Other times, it’s the flirt (sometimes) who wants to get that cute server’s attention, or the wise counselor, when a girlfriend is struggling with a problem (I’m really obsessed with analyzing everyone’s problems, including my own!), or the goofball.

 

Goats*That awkward moment* at Disney when you can’t figure out why the goats love you so much…and later on you find the bag of edamame in your purse. -_-

 

 

 

In fact, when I’m among my closest friends, spina bifida is a topic that is introduced very rarely. I think, by this point, most of them acknowledge it in passing, the way you would acknowledge a person’s eye or hair color, or stature.

I’m also just as protective of my friends as they are of me…sometimes I’m the “older sister,” and sometimes they are. It just depends on the situation.

That isn’t to say that I feel ashamed of having spina bifida…but it does make me uncomfortable to be around people who barely know me and already feel the need to pepper me with a dozen questions I might not feel like answering at a networking event. Sometimes, I’ve made an unconscious decision to remove that particular hat for the evening…and that’s okay. I feel entitled to that. 

I’ll always be an advocate for the spina bifida cause. That won’t change anytime soon, I’m pretty sure. I’m committed to it, because I understand it. 

But if I paused to dwell on spina bifida every day, every moment, every second when I’m getting dressed or putting on makeup, or picking out my earrings…well, then, I’d never make it out the door on time.

Angels Abound in Sin City (Part 3 – Final)

Good angels are fallible … they sin every day and fall from Heaven like flies.

Anatole France, The Revolt of the Angels

 

 

Sorry, but I couldn’t resist beginning a post about “sin” and “angels” with something like that! 😉

After two weeks of getting back into the swing of things, and getting the hang of my new job, it’s finally time to get down to business and talk about what really happened in Vegas. Sure, you know all about the fabulous hotel I stayed at, and the awesome team from Vitapath Genetics that made it all possible for me.

Now, however, I must tell you about what I learned at the Second World Congress on Spina Bifida, critical, vital information that I am even now, still digesting.

 

With Dr. Timothy Brei, developmental pediatrician and SBA's Medical Director. He has spina bifida too, and meeting him, a medical doctor with SB, was by far one of my proudest moments! :)

 

So, without further ado, here are some of the highlights from the sessions I attended to get informed. While I have dealt with a plethora of physical and physiological secondary conditions related to spina bifida throughout my life, I was particularly interested in listening to what the researchers had to say about the transition to adult-centered health care in people with spina bifida, as well as psychosocial outcomes in this population.

 

*Health Issues for Latinos with Spina Bifida

  • Mark A. Canfield, Ph.D., is the Co-Principal Investigator for the Texas Center of the National Birth Defects Prevention Study. He is also the manager of Birth Defects Epidemiology and Surveillance Branch at the Texas Department of State Health Services. 
  • There are 50.4 million Hispanics in the U.S. By the year 2050, Latinos are expected to form 30 percent of the U.S. population.
  •  Where you are born can influence whether or not you have a child with spina bifida.
  • The Texas Pregnancy Risk Assessment Monitoring System (PRAMS) was a survey that analyzed pregnancy outcomes for mother and child between 2002 and 2010 based on several variables, such as maternal smoking, the mother not taking a multivitamin daily, and maternal obesity.
  • Another study analyzed awareness and use of folic acid by moms who have had a neural tube defect-affected pregnancy before. Results showed that more white, English-speaking mothers used folic acid than Hispanic, English-speaking or Hispanic, Spanish-speaking moms did.
  • Latino parents of children with spina bifida tend to report less satisfaction as parents and they also perceive their kids as more vulnerable.
  •  Parents born in either Mexico or Central America are more likely to have a child with spina bifida than their Hispanic, U.S.-born counterparts.
  • Dr. Canfield concluded that: relative to whites, Latinos are only at a “moderately elevated risk” of having a child with spina bifida; Latinos are at greater risk if one or both parents is foreign-born; Latinos are less likely to be exposed to smoke, one of the risk factors; they are less likely to take supplements; and they are more likely to be obese.

Morning view from the the 43rd floor of the Cosmopolitan Hotel, where I was staying!



*Family and Psychosocial Concepts and Concerns in Spina Bifida

  •  Dr. Grayson Holmbeck stated that children with spina bifida that come from a low socioeconomic status have a higher risk of developing behavior problems and problems with social adjustments.
  • Girls with spina bifida are at high-risk for social difficulties and a negative physical self-perception.
  • In the development of independence and autonomy, boys with spina bifida tend to lag behind the girls.
  • Children with spina bifida tend to develop more effectively if they have many positive social experiences.
  • Between the ages of 8 and 13, kids with spina bifida tend to have a very limited understanding of hydrocephalus, of the purpose of their shunts, and how it works. However, they do tend to know exactly where their shunts are located.
  • In early adolescence, there tends to be a shift in responsibility for catheterization. Usually, by age 13, the child becomes fully responsible for self-cathing.
  • There tends to be a shared responsibility in the bowel management routine between parent and child in early adolescence.
  • The results of Dr. Holmbeck’s research indicate that factors associated with success as an adult with spina bifida include high socioeconomic status, a high level of intrinsic motivation, and less interference from the mother.
  • Families in the study sample with a child with spina bifida tended to be less cohesive, and the children with spina bifida were more passive in their interactions with the family.
  • The sample of adolescents without spina bifida who matured early demonstrated more family conflict than those without spina bifida.
  • One possible hypothesis that might explain why there seems to be less conflict is that families with a child with spina bifida tend to respond less to changes during puberty.
  • There is evidence that maternal overprotection negatively affects children with spina bifida.
  • Maternal criticism was predictive of depression symptoms in the sample of youth with spina bifida.
  • During the study, researchers asked to observe youth with spina bifida while interacting with a friend of their choice. The majority stated that they didn’t have good friends or they chose a sibling or cousin.
  • Social function varies in children with spina bifida. In many cases, when a child with spina bifida nominated a peer as “best friend,” that nomination wasn’t reciprocated.
  • Researchers conclude that it’s critical to study young people with spina bifida during adolescence. The psychological problems are just as important as the physiological ones.
  • Also, children with spina bifida with a low I.Q. tend to have more parental interference.

 

Attendees listen intently during one of the World Congress sessions.

 

*Medical Issues and Preventable Conditions Among Adults with Spina Bifida

  • Adults with spina bifida and urinary incontinence are .77 times less likely to be sexually active.
  • There is no distinction in satisfaction with life between men and women who are sexually active and those who aren’t.
  • The majority of adults with spina bifida without hydrocephalus in the study began dating at 18 years of age. In adults with spina bifida and hydrocephalus, the age at which they began dating was typically 21.
  • Only 38 percent of men and 54 percent of women with spina bifida had been adequately informed by their doctors about sexuality.
  • Doctors were advised during the presentation to be professional when discussing sexuality with their patients, and not to assume that the patient knows as much as they do.
  • Researchers concluded that there isn’t much research or information about young adults with spina bifida and sexuality.
  • This next part was by far the most harrowing portion of the educational sessions. In this part of the seminar, attendees learned just how high the death rate is among adults with spina bifida who are admitted to the hospital with one disease or injury and end up contracting another disease or obtaining another injury.
  • Several disease and conditions studied include urinary tract infections, complications related to surgery, pneumonia, and infections due to ulcers.
  • The vast majority of deaths analyzed in this study were due to sepsis.
  • In the 65+ group, the majority of deaths were due to stroke.
  • 7.2 percent of the hospitalizations in the study were due to UTIs; about 2 percent were due to bacterial pneumonia.
  • The UPMC Wellness Center is dedicated to helping prevent these complications.
  • The speakers conclude that if we don’t take the initiative to prevent these complications, we should prepare ourselves for the reality that 1/3 of patients will be re-hospitalized and 1/3 of them will die.

Dr. Irene Dietz is a pediatrician specializing in developmental behavioral health and neurodevelopmental disabilities. She's awesome. :)


*Transition to Adult Health Care

  • Many adults with spina bifida reported that they want to take charge of their own health care.
  • Many adults with spina bifida say they “like” being the ones that deal with the health insurance companies.
  • Using peer mentors and greeters allow transitioning young adults to talk to other teens about their needs and concerns.
  • Feedback from teens indicates teens prefer when they can contact doctors directly themselves, instead of doctors talking directly with parents.
  •  They appreciate having someone to talk to who has been through the transition process.
  •  Transition is defined in part as the point at which the individual begins to manage their own care of the chronic condition.
  • Role negotiation with the parents over issues such as incontinence makes it a particularly stressful time for young adults.
  • The social implications of living with a “disability” and the potential for bowel or bladder accidents can make the transition period even more challenging.
  • Conclusions included: “Healthcare providers working with YASB transitioning to adulthood need to reinforce the importance of increasing self-efficacy in order to positively influence health competence. Future research should investigate the relationship between perceived health competency and self management.”

With Cindy Brownstein, SBA's President & CEO, and Christopher Vance, SBA's Director of Development and organizer of this event.

*Hal Pote Memorial Lecture (given in memory of the late Hal Pote, who founded the Spina Bifida Foundation in 1987 and passed away in 2007)

  • Father-son published author team, Scott T. Price and Pat Price, shared lessons about the innate goodness of human nature while traveling cross-country, interviewing everyday people for their book, Looking for Goodwill. These two were among the most inspiring people I met during World Congress. There doesn’t seem to be an ounce of negativity in them, and you can tell by listening to their stories that they consciously seek out the best in everyone they come across. Scott and Pat traveled almost an entire year, visiting each state, and searching for the best that America had to offer.
  • Scott and Pat shared anecdotes from their book about how they interviewed strangers at random about the good things they have done. Each stranger they came across was handed $10 and they asked him/her to do something “good” with it. The gentlemen also read aloud to us letters they have received so far from the strangers telling them what they did with the money. Their responses show that many of them made life-changing impacts on other strangers.
  • This father-son initiative to interview strangers across the country, and inspire them to do good for others, truly inspired me in a very “Pay It Forward” fashion. Pat and Scott are a remarkable example of how people both inside and outside of the spina bifida community are all capable of effecting positive change.

I truly hope my adventures in Las Vegas did more than simply create lasting memories for me. I hope this opportunity for me serves as yet another opportunity to educate people about spina bifida and maybe even give people within the spina bifida community a better insight of what exactly it is that we’re all fighting for.

I met so many amazing people who are equally committed to the spina bifida cause– meaning both prevention and quality of life. Certainly, these were all “angels,” each in their own way. I am forever grateful to each individual I came across during that week.

I cannot thank VitaPath Genetics enough for offering me this experience of a lifetime! If you’re not already signed up for the Spina Bifida Genetics Research Study, please do so, as either a mom of someone with spina bifida, or as a control group mom. (Adults with spina bifida– be sure to let your moms know about this!)

Also, don’t forget to “like” us on Facebook in English and/or Spanish, and to follow us on Twitter in English and/or Spanish.

For more information on the research studies that were presented at the Second World Congress on Spina Bifida, please click here

 

Love,

Laurita ♥