Snowball Effect of Spina Bifida

This past week something hit me. When it comes to our kiddos’ health, there seems to be a snowball effect.

The idea hit me like a brick after reading the following articles/posts in just a matter of a few days:

First, on Wednesday I got an email saying that a study revealed that SB kiddos are the least active of all the special needs categories.

Then, on Thursday I got an email from Dr. Mercola talking about how studies are showing how crucial exercise is to our entire being, including our genes, our DNA and our brains.

A few days later I read a post about a little SB kiddo with so many problems and then in the comments section it was revealed that this child is on multiple drugs.

This made me think of another kiddo who spent months in the NICU where the doctors would do a certain procedure to address a certain problem. Whether or not it fixed the first problem, it would create a new problem. Then a drug would be prescribed to address the new problem, which would create an even more serious problem. This whole thing snowballed out of control. And in the end it came to light that the doctors made a lot of poor decisions, causing many unnecessary problems. And the child suffers today as a result.

Then back to Mercola, on Friday I read an article talking about how the gut is turning out to be much more important to overall health than previously thought. Mercola goes so far to say that 80% of your immune system is located in your gut. This article in particular talked about dysbiosis, which would have been a foreign term to me had I not seen it previously in the article about Miralax causing dysbiosis. Jury is still out on whether or not that is true, but Mercola says dysbiosis has been linked to psychiatric problems, type 2 diabetes, obesity, colorectal cancer, immune deficits, asthma and sinusitis. This made me think of the potential slippery slope of Miralax.

All of these articles made me realize how much the quality of our kiddos overall health can affect their outcomes. Our bodies are made up of highly complex interconnected systems. And they all affect one another.

A body that is clean, balanced and healthy can focus on growing and thriving.

A body that is toxic, imbalanced and sick can only focus on trying to get well.

I see this dynamic at work in the Spina Bifida world.

And I don’t want to focus on the negative side of it. I want to focus on the positive. My point in writing this whole post is that I am excited for our children’s futures. If we can keep their bodies free from toxicity, nourished with healthy foods, supplemented with natural healing medicines, supported by physical therapy and strengthened by exercise and weight training, their bodies will become strong and able to grow (including their nerves).

I have so much hope for our healthy kiddos. There are so many new options every day. Technology is constantly improving.

From weight training & pelvic floor exercises to herbs & essential oils, there are so many things our children can do to improve their own futures.

I hope you are encouraged too!




  • Great post! This is so true. I am so thankful to have found this board and finally some alternatives to the mainstream recommendations. It has not only helped my sweet Caroline (yay, no Miralax!) but has also helped my family. We have been more committed to healthier diets, more exercise, healthier bodies, healthier minds. Thanks for this great post. I look forward to reading the articles soon!

  • I’m so sure this is right. And it actually is the companion to something I’ve always thought. Which is that much of what used to be true, and that still is out there to some degree, about mental development and such has to do with a complete lack of opportunity and a presumption on the part of various professionals, that our kids were a bit of a lost cause.

    When we were Boston last summer for follow up on our ETV Dr. Warf said something to me that really stuck. He told me that “it used to be” that the medical community felt that when they were babies, just recovered from back closure and hydro management, that point was the best they would ever be and it was all downhill from there. He said that, of course, that is absolutely NOT true but that a lot just wasn’t understood. That if we see any deterioration in Z at any point it isn’t just what happens, it would absolutely be a sign of something wrong and we should react swiftly.

    I think we all know this, in the back of our heads. But I see it as influencing so much. If a child was born who was only expected to get worse, there would have been no push for therapy. There would have been no reason to pressure schools for better or equipment companies for more. And if you were the child in that situation of COURSE you would not have developed normally. OF COURSE you would have had issues and lack motivation to be active or engaged. Because why? Clearly you are all broken and headed for the heap.

    I am so grateful that we are parents of SB children at a time when medicine has advanced, stubborn, wonderful patients and parents have insisted on better anyway. I think we have such opportunity to reverse some of the trends (i.e. lack of physical activity) that still skew the averages.

    I’m also really aware of how much I want to be sure that we (I) do this in a way that NEVER communicates to Z that I think she needs “repairing”. She’s not broken. She’s not substandard. It’s just a thing she has to deal with. I’ve had my things too. I read a great quote last week. It was from a totally different context but the writer said, “I’ve never been one to use the ‘special needs’ term. It’s kind of meaningless. I have special needs too, they’re called Diet Coke and Ativan.” (Fab blog, if you are interested. ) I really, really feel the exact same way. Z isn’t my only “special needs” kid, and 20 years into it, I have to say I really see the importance of exactly that attitude.

    That’s the long way of saying I think we have joined the SB community at a fantastic time and by putting bodies and minds to the positive we can make a huge difference in our kids and their outcomes both physically and beyond.

  • I completely agree. Just because they are born with their condition, rather than developing something later in life, doesn’t make it any more “special” or “difficult”.

    We have accidents, we develop health conditions, we all have “special needs” of some sort or another.

    My older daughter’s autoimmune condition which she didn’t develop until just a few years ago is much more painful and difficult for her to bear than little Pooka’s Spina Bifida. Pooka has NO IDEA there is anything wrong at all. She is a happy, silly hilarious little doll face clown. 🙂

  • Great post!!! I really loved how you worded this, “A body that is clean, balanced and healthy can focus on growing and thriving. A body that is toxic, imbalanced and sick can only focus on trying to get well.” I’m such a big believer in adequate sleep and good nutrition, as little medication as possible. Every time we go to SB clinic (once a year), the team of drs is very surprised by us. It used to confuse me, until I began to understand why. Many parents of SB don’t do research themselves, they instead let everyone else tell them what to do and how to do it. Many parents are scared and tired and confused and looking for simple and easy and quick help. Natural support is not easy or quick- it usually takes a lot of trial and error. Letting your kids with SB exercise can be scary, I know I want to put mine in a bubble. Giving your kids the power to catheter themselves, take care of their toileting, etc can be hard. It is SO worth it, especially when I see the surprise and joy on the SB clinic drs faces, because we have made their day by being the healthy ones who are not overweight, who are not struggling very hard in school, who are not dealing with multiple side-effects of medicine. It’s SO WORTH IT!!!

  • That’s awesome!!!

    Maybe if enough healthy, thriving “naturally-treated” SB kiddos pass through their clinics, they will at least think twice about it.

    I have such a strong desire to help people. I used to think if they only knew, they would all jump on board. Now I realize that is not true.

    But my hope is that we can at least make the job easier for those who do want to jump on board.

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