Laura Tellado, blogger, advocate, friend, and admired hero by all in the community, using her voice via her blog, Holdin’ Out for a Hero to share her story as a young adult living with Spina Bifida (SB).
Chronicling her life over the years, Laura has made an impact raising awareness of this condition by sharing her own personal experiences to get the community involved in fighting for a cause that affects hundreds of thousands of individuals in the United States.
And with October being National Spina Bifida Awareness Month, Laura has taken to sharing one fact a day about SB via her social networks and will also host along with several other organizations and blogs a Twitter activism party. The Walk-N-Roll will be held on Wednesday, October 17th at 9PM EST (more info provided below).
Laura continues to use the power of her words to share with us facts and myths about spina bifida. In our conversation, we also find out what the community can do to continue to raise awareness, educate and empower others.
- If there is one thing you would like people to know about spina bifida, what would it be?
I would like for people to know it’s a condition and a cause worth noting. It’s one of the most common birth defects, and it’s a lifelong condition. I know, that sounds more like three things, not one!
- Share some common myths about spina bifida?
I’ve heard them all. People have asked me if it’s terminal, or even fatal, and if “it hurts” to have spina bifida. It’s not terminal, and definitely not fatal, but yes, in some cases even in the 21st century, children and adults alike have died from complications associated with it. But I believe that to be true of any chronic illness or disorder.
I’ve even been asked if it’s similar to muscular dystrophy. While I don’t know much about MD, I would care to wager it’s not similar. Spina bifida is a neural tube defect that prevents the spinal cord from closing properly during the first 28 days of gestation. After these critical first days of pregnancy, before the woman even knows she’s pregnant, spina bifida is either there or isn’t, and what it is, is an opening in the spinal column.
Also, perhaps one of the most common misconceptions nowadays about spina bifida, even among SB organizations and members of the SB community I’ve come across, is that SB is 100 percent preventable. It’s not. And there is no cure, either.
- Share some truths about spina bifida that people may not be aware of?
Spina bifida is the most commonly occurring natural cause of paralysis in children in the United States. It is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
Latinos actually have the highest incidence of spina bifida out of all the ethnic groups. This is believed to be due to a low consumption of folic acid, a vitamin of the B-complex that can prevent cases of spina bifida 70 percent of the time.
That being said, like I just mentioned, folic acid is only one part of the equation. Some women’s bodies have problems metabolizing or absorbing the folic acid in their system. So, there are actually women who take the recommended daily dose of folic acid (400 mcg daily) for years and still have a child with spina bifida. And that’s something that organizations need to be fully aware of so that they’re not contributing to the misinformation that’s out there already. Many parents will jump through hoops to prevent their child being born with a disorder, but as of right now, there is no sure-fire prevention method.
I like to remind people that about 80 to 90 percent of people with spina bifida also develop hydrocephalus, commonly termed “water on the brain.” That’s an entire neurological disorder by itself, and there is no cure. The only treatment available is to insert a “shunt,” which drains the cerebrospinal fluid and keeps it from accumulating in the brain. Untreated, it can cause swelling of the head, irreversible brain damage, and even death.
Another big truth I recently discovered is that, according to a comprehensive European study published in Prenatal Diagnosis analyzing data on termination rates for five different birth defects, about 64 percent of babies with spina bifida are aborted globally. While I don’t mean to politicize my cause by getting into the polarizing “abortion debate,” I can’t help but wonder how many cases of abortion are due to medical misinformation.
In the past three years, I’ve made developed friendships (many online) with many moms of children with spina bifida. Of these women, a countless number of them have told me that their Ob/Gyns encouraged them to get an abortion after the baby was diagnosed with spina bifida. When a medical doctor who is entrusted with the care of both mother and baby is actually recommending abortion as a “solution,” that underscores a huge conflict, professionally. What’s more, while a child with spina bifida in the U.S. will undoubtedly be immediately seen by a team of specialists– neurosurgeons, urologists, and orthopedic surgeons, to name just a few– after the baby is delivered, the Ob/Gyn has nothing to do with that child and their follow-up care. So how can they, in good conscience, tell parents what they’ve told my friends: “ Your baby will be a vegetable,” “it’s going to be a monster,” “he will have no quality of life,” “there’s no hope.”
And yet, I’ve seen hope prevail time and time again when I see videos or photos of these kids taking their first steps, saying their first words, shocking their parents with their intellect and humor! So, doctors really don’t have the right or the power to say with certainty what will happen. None of us do.
- Has it been difficult for you to open up and share your story?
Absolutely. It’s been especially difficult sharing details about my personal life that I’m very sensitive and private about. It’s not easy writing about incontinence and depression and multiple surgeries without worrying that people are going to feel sorry for you, or that they’ll call you “inspirational” simply for breathing.
But it does make me want to work hard so that my life can truly be an inspiration– not because I’m living it, but rather in how I choose to live it.
There’s also always going to be some negative backlash. For me, thank God, it has been minor, and it can’t even begin to compare with the level of support I’ve received from so many strangers! But, you can’t please everyone, so why try? Now, I’m just focusing on doing as much good as I can, raising awareness, and hopefully being able to give some encouragement and reassurance to families who are going through similar things my family has gone through. This week, I received three Facebook messages from strangers, after I published a piece on NBC Latino. All three were messages of encouragement and praise, congratulating me for what I’m doing. I assured them that I don’t feel I’m doing anything extraordinary– maybe it’s just the fact that I’m the one who chose to do that. Someone has to bring awareness of spina bifida to the public! But, it’s during those moments when I receive a pat on the back, a message that says, “You’re doing something right,” that I realize it’s worth the pain of reopening old wounds and letting people in.
- Your cause is making people more aware of spina bifida, has it changed how you view on spina bifida?
Oh, absolutely. I used to consider myself very knowledgeable about spina bifida, and I always thought that being a member of the Spina Bifida Association of Central Florida, and now a board member, I was very well-connected with the SB community. I realize now that perhaps I’m part of a more privileged community. Here in the U.S., we’re not as worried about finding a support group or organization to join. A woman who messaged me this week said she started her own Facebook support group in New Zealand after she couldn’t find anything similar for her young son. It makes me realize how truly fortunate I am to personally know so many other families living with SB, and now I’m part of a global village that transcends language barriers, geographical limits, and socioeconomic status and the availability of resources.
Also, connecting with moms of SB, whereas I only used to relate to my own peers with spina bifida, has completely evolved my perspective. It’s challenged me to put myself in the shoes of my own parents– of so many parents that make difficult and often painful decisions for their children.
As I’ve grown myself, I’m beginning to fear the lack of resources available for adults with spina bifida. That’s something I think the medical community has grossly overlooked. Back in the 1950s, before shunts were invented to treat hydrocephalus, the majority of babies with spina bifida died shortly after birth. Now in the 21st century, people with spina bifida have a normal life expectancy. But our longevity comes with a cost– simply put, doctors weren’t ready for us to be growing into adulthood, and aging. So what happens? Many adults (like me!) still see their pediatric specialists and are deprived of a seamless transition into adult-centered health care. There are very few spina bifida clinics for adults in the nation.
Furthermore, after the onset of puberty, young adults with SB are more prone to developing clinical depression than our non-spina bifida counterparts. I’ve realized that a key missing piece of the healthcare puzzle is mental health. We need to be advocating for the availability of mental health care at an early age, if needed. How are young adults with spina bifida going to integrate fully into society if they’re dealing with debilitating depression? This needs to be addressed.
- Why do you think there is such a high incidence rate of spina bifida within the Latino community than in any other ethnic group?
Well, researchers say that it’s partly due to the low consumption of folic acids as part of a steady diet. Many foods such as cereals are now fortified with folic acid. They weren’t before. But a few years ago, the National Council of La Raza (NCLR) partnered with Wal-Mart and GRUMA, a food production company, in an initiative to fortify corn products, which are consumed often by Latinos, with folic acid.
Other than that tidbit of information, I really can’t say why. What I do know is that it is an issue Latinos need to know about, and need to be educated about.
- How can we, as a community spread the word to lower those numbers and continue to bring awareness?
Organizations like the Spina Bifida Association and March of Dimes are doing a fabulous job of disseminating information to communities around the nation about the role of folic acid in preventing spina bifida and other neural tube defects. I really think that’s become more mainstream now.
What I do worry about is what will happen to the more than 166,000 people living in the U.S. right now with spina bifida, if we only choose to focus on that one part of the equation– prevention. Thinking of my friends whose children’s lives were so callously dismissed by their “healthcare providers,” we need to be careful with the language we use to educate the public about prevention. Yes, it’s very important to do all we can to ensure healthy pregnancies. But what happens after a child is born with spina bifida? What happens after that child grows up? I saw a PSA last October (yes, during Spina Bifida Awareness Month!) that aired on Spanish-language channels, distributed by the Spina Bifida Association. Something apparently got lost in translation– the ad claimed “spina bifida is 100 percent preventable.” I was like, “what?” No way. I’m sure it was a mistake, but it was a big one.
As Latinos, we should also be reaching out to families that are moving to the U.S. and don’t know where the resources are for their family members with spina bifida. We were very fortunate as a family to know that we were moving to Orlando when they had recently opened a clinic for children with SB. There needs to be more open dialogue with the national Latino community to ensure all have access to resources they need, in the language and in the format they need it in. No one can be left to fall through the cracks.