To the doctor who believes folic acid can prevent spina bifida and a lifetime of disability

I have a child with spina bifida and I admit I’m one of the many parents who has mixed feelings about the folic acid prevention topics – surprisingly this is the first time I’m writing about the topic on my blog. I recently read an article written by Dr. Lance Chilton titled “Folate before and during pregnancy can prevent a lifetime of disability” and feel compelled to share my thoughts on folic acid.

My son Chance was born a little over four years ago with spina bifida, so forgive me if I’m passionate about advocating for those who are affected by this birth defect – but this little guy has changed our lives. I took folic acid for years before he was born – but he was still born with the birth defect.

For those who aren’t aware of what spina bifida is – it is a birth defect that a person is born with. During the first month of pregnancy Chance’s spine never fully formed. He was born with an opening in his back that was about the size of a silver dollar. This “defect” required surgery when he was just a few hours old. Spina bifida has no cure and often requires complex care in various areas.

I value the role of “prevention” and think it’s so important. Surely you know about folic acid – its the supplement we pray will prevent birth defects like spina bifida. It’s perceived to be the miracle worker in healthy foods and vitamin supplements – and if taken research has proven it CAN reduce the chances of having a child with a birth defect like spina bifida. Eat your foods rich in folate and take your vitamin with 400mg of folic acid – that’s what women should do before and during pregnancy. I did take folic acid and I have a child with spina bifida.

I did everything the doctors said to do – and still have a child with spina bifida – something we tried so hard to prevent. It’s proof that folic acid isn’t the sole way to prevent a child from having spina bifida. But surely every time the topic of spina bifida comes up – many of us parents are questioned and asked why we didn’t take our folic acid. In fact, during my pregnancy one of my own colleagues who is well educated in nutrition asked this very question, “Don’t you know folic acid can prevent spina bifida?” It goes to show that most of society is lead to believe that not taking folic acid is the cause of spina bifida. Well, I have some news for you all…thousands of mothers took their folic acid just like they were told to do and they have children with spina bifida.

More folic acid definitely couldn’t have made my child a more adorable child…aren’t kids with spina bifida some of the cutest on the planet? Our son shared his sweet personality at a very early age.

In Dr. Chilton’s article he notes that another doctor, Scott Obenshain, has shared that fortifying foods with folic acid has decreased the occurrence of neural tube defects like spina bifida – which is very true. He mentions over 5 million children have been born with spina bifida. Currently there are approximately 166,000 individuals in the U.S. living with spina bifida and about 500,000 living with the birth defect worldwide. The article misleads readers to believe that spina bifida is 100% preventable. Although Dr. Chilton does reference that folic acid can help reduce the occurrence of spina bifida by 70% it is disappointing to hear a medical professional refer to spina bifida and disability saying “How much better, though, to not have to head off to college in a wheelchair, to be one of the 22,000 children saved by folate every year around the world from a life hampered by disability!” Folic acid surely can reduce the occurrence of spina bifida by approximately 70%, but it is not a 100% method of prevention of the birth defect. So many causes of spina bifida are still not known and for most women like me. We will never know “why” our child was born with spina bifida. I’ve come to trust that I could not have done more to prevent our son’s birth defect. In fact, raising a child with spina bifida has taught me that some things in life, regardless of how challenging they may be, cannot always be prevented – and what initially is perceived to be a huge burden often proves to be a life changing blessing.

The image below is of our son Chance when he was just one week old after he went through his 3rd surgery to have his 1st shunt placed. Now before you “awe poor baby” our boy – lets appreciate the strength of these kids born with spina bifida. They are resilient and bounce back from some of the toughest challenges in life. When most other people would want to give up – they have learned to thrive amidst the most challenging of circumstances.

Yes, Dr. Chilton, as you say it’s amazing what the “tiniest dab of an important substance can do!” I’m so thankful folic acid has been able to reduce the occurrence of spina bifida by 70% but have you ever given any thought to the 30%? You know the 30% of us who DID take folic acid daily for months or years prior to conceiving. My diet was filled with foods containing folate yet I still had a child with spina bifida. I appreciate you helping educate your community on the value of folic acid supplements, however, for thousands of families folic acid supplements were NOT enough to prevent spina bifida. By no means do I discourage the use of folic acid – but perhaps medical researchers have a lot more work to do to better understand the causes of spina bifida because folic acid supplements alone are not the only solution to reducing the occurrence of spina bifida. So many families affected by spina bifida have spent time wondering “why” and “if” they could have done more to prevent their child’s birth defect. How about doctors do more research into if women conceiving are able to process common folic acid foods and supplements properly? Or perhaps we also place focus on a man’s nutrition and folic acid intake – because surely they have just as much of a role in the creation of their child. Or perhaps there needs to be more research into environmental conditions – there are areas in the United States alone that have a higher occurrence of spina bifida which is evidence that much more than folic acid is to blame for children being born with spina bifida. Folate may help some, but I pray the medical community and those trying to prevent spina bifida stop trying to lead the world to believe that folic acid is the sole way to prevent spina bifida. This article misleads readers to believe folic acid is the magic solution to preventing spina bifida.

My bigger concern is not Dr. Chilton’s mention of the value of folate in a women’s nutrition before and during pregnancy but the references to spina bifida and disability are so disheartening to read. This recent article written by him is anything but heartwarming for a family affected by a disability to read. Yes, I admit – if I had the choice – my son would not have been born with spina bifida. In his four years of life he’s been through so much – 13 surgeries, 6+ weeks hospitalized, and countless medical tests, appointments, and therapies. In fact, his cost of care in four years has far exceeded the estimated lifetime cost to raise a child with spina bifida. The CDC notes that the estimated lifetime cost to care for a child with spina bifida is $706,000 – the birth defect can certainly be costly. I do believe families should do as much as possible to prevent spina bifida because the birth defect typically does lead to a lifetime of medical needs, but please don’t consider individuals born with spina bifida to be confined by their disability or that they will feel “hampered” by their disability. In fact, many born with spina bifida will tell you that the life they lead filled with medical challenges are all they have known and most do not want you feeling sorry for them. Besides, whether or not an individual attends college in a wheelchair – they can still lead an amazing life and I suspect most aren’t sitting there wondering “did my mom take folic acid?” I’ve learned of many people living with this birth defect are leading full lives – attending college and performing jobs such as educators, writers and doctors – certainly proof that their lives are not “hampered” by spina bifida.

Chance may have experienced a significant amount of medical challenges in his lifetime  but I can sense these challenges are strengthening him.

Our son Chance has proved he’s capable of amazing things. If you sit and feel sorry for the medical moments he’s faced you’ll miss out on seeing the great things he has already achieved. I’m pretty sure he can out swim most kids his age!

And rather than fearing if a child may be “hampered” by a life in a wheelchair – I pray doctors sharing information on spina bifida don’t lead the world to believe that all individuals living with this birth defect will be confined to a wheelchair. In fact, many do walk – they may need the support of braces and assistive devices but nearly 70% of individuals with spina bifida do walk with or without support! Even if they require a wheelchair for mobility – I promise it’s not the end of the world. Our son also uses a wheelchair for longer distances and if he ends up going to college using his chair – I surely won’t make him feel like he’s living a worse life because of it.

In so many ways Chance is just like any other kid his age – he loves to color with his brother!

Just like every other kid he has a blast playing at the park.

And he’s an active little guy always on he move – having fun through it all.

He may require a little help at times but overall he’s so much like any other child his age.

In fact, put him out in public and we’re fairly certain he’ll find his way around on his own. In fact he prefers to move around independently. There’s no reason to feel sorry for him because he was born with a birth defect. We tried our best to prevent it  – but we’ve realized he was meant to be in our lives living his life with this birth defect and now we will do all we can do support his needs.

There’s one thing missing from Dr. Chilton’s article – and that’s the ounce of hope needed by families affected by spina bifida – for those families who did take folic acid who have or will have a child with spina bifida. Dr. Chilton you are correct, spina bifida is the most common permanently disabling birth defect with complex challenges that often leads to a lifetime of care and expenses are often 13 times greater than an average child’s medical care. We were reminded of that this past month as our little guy underwent his 13th surgery for a shunt revision.

Dr. Chilton you forgot to mention that individuals born with spina bifida are among the bravest, strongest, and most kind hearted individuals.

They are resilient and no matter how many medical complications they may endure in their life…they are loved.

This birth defect our son was born with – it doesn’t prevent us from loving him. On the contrary spina bifida has taught us just how powerful our love for him is. It’s also taught us that what we once perceived as an “imperfection” has since helped us see that Chance is perfectly made.

I pray the next time a doctor has an opportunity to educate a community or their patients on spina bifida that they find a way to bring more hope to those who may someday be affected by this birth defect. Prevention is important – but lets pause to think about how these families affected by spina bifida may be feeling. So many of us did all we could to prevent the birth defect and have a child with spina bifida. Our world has created enough stigma against spina bifida and disability. We need more doctors who care to also bring hope and optimism to those who may be affected by spina bifida. Rather than trying to eradicate spina bifida from the planet I wished the world would spend more time finding ways to support those families whose lives are forever changed by spina bifida.

Now take a look at the photos below – they are just a fraction of the individuals born with spina bifida that I’ve photographed in the past four years. We can sit here and discuss prevention and folic acid – but the reality is that 30% of the population has taken folic acid and they still have children with spina bifida. And guess what? To our community of families affected by spina bifida a more important thing to worry about than folic acid is promoting a community that will support the families affected by this birth defect.

If you’d like to see more hopeful images and reflections of spina bifida visit the Redefining Spina Bifida facebook page.

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June 17, 2015 - 10:43 pm

Diane Cole - My 23 yr old daughter w/sb and I thank you for this beautifully written piece.

June 17, 2015 - 11:39 pm

jenny - Thank you for this. I have heard horrible comments such as the ones mentioned. I took prenatals an entire year prior to conceiving my son born with spina bifida. I also found it in my family history. I still have dark days of self blame so now I have this read to pullmeup.

June 18, 2015 - 2:29 am

Zeljka - Thank you for writing this! I also have a daughter with spina bifida who is now almost 4 years old, and I also took folic acid. For years I have been thinking that there must be some other cause for spina bifida. It’s only a matter of figuring out what that could be. I was talking to our neuropediatrician and he told me this: there are 3 possible causes: 1) genetic disposition, ie. if someone in your family has spina bifida, there are bigger chances your children can get it (my daughter is the first, and she is my 4th other 3 children are completely healthy) 2) folic acid (I eat plenty of leafy greens, plus I took folic acid supplements), and 3) it happens, ie they have absolutely no idea what yet, but it was the luck of the draw. Throughout the years, I have met more and more people who are part of the 3rd category, yet some doctors accuse us of not taking folic acid. I dare say they are not fully educated on the subject. There has to be more to the story. I only hope that someday, they find the missing link.

June 18, 2015 - 3:18 am

Jamie - I loved your response and could not agree more. That article was just terrible. I was taking folic acid when I got pregnant with Maddy, I was healthy, was not taking any medication, and was doing everything “right “. it did not prevent her from being born with spina bifida, but that in no way changes the amazing person that she is. because of her we also adopted another sweet girl with spina bifida. If it weren’t for Madi we would’ve never adopted my daughter Ramya It makes me so sad that people will see their wheelchair and let it define them. Their disability does not define them.

June 18, 2015 - 3:36 am

Kiran Kumar - Thank you for writing such a beautiful article. Every single picture and sentence you have written, I see myself. I am 41 years old, born with SB.
I was born in 1974, and my first set of surgeries started when I was about a month old. I have had my long list of challenges being born with a disability. Be it putting up with stigma, curios eyes, weird remarks, keeping up with kids my age..etc. I have to admit, my parents and brother were instrumental in putting it in my mind that I am normal as anyone else. There was never a restriction put on me, because of my medical condition. Now I live a near perfectly normal life, and I walk unaided, albeit with a limp. Have been married once, and have a beautiful 8 year old daughter.
I hope this helps in parents with SB children. Keep the spirit up. Never make them feel, they are “less abled”! Its all in the mind. Trust me, both my ankles are fused (there’s zero movement), and I drive vehicles with gear (more so to prove a statement that I am normal and don’t need an auto transmission). Just one of the many things I do, that people feel a SB kid cannot do! :)

June 18, 2015 - 11:32 pm

Rocio Polanco - Excellent response!!! My 24 years old son with SB is a professional translator. They can do it!!

June 20, 2015 - 12:30 am

Regina Mary Boutin - Wonderful article. Back when I was born in 1956, folic acid wasn’t in the picture. I have the most severe form of SB, but went to”regular” schools until my asthma got worse. Got my BA, MSW, worked, married (divorced later), active in my church and community despite using a motorized scooter (more because of the asthma, not SB). Have a pretty full life despite many hospitalizations and surgeries. My parents were encouraged by the doctors who said to treat me as normally as possible and they let me know the world wouldn’t conform (not sure if that’s the correct word) for me, but I had to fit into the world as it was.But thank goodness we’ve come a long way to make the world accessible! We want to be part of the world, not objects of curiousity or pity!

June 20, 2015 - 2:16 am

Kat - Thank you so much for this article. I hardly ever comment them, but here I felt so relived after reading it, I simply had to.

We are from Germany and it’s exactly the same. All you hear them saying is to take folic acid. So I did! Nobody knew about the sb my son (now 4 years old)has even though we had screenings and the triple test done and only found out two days after birth. He has sb occulta and a tethered cord. So far he was lucky in his life since he isn’t affected too badly. And he is the most happiest child I have ever met. He is active and loved by all the people he has met in his life so far…

I felt tremendously guilty for along time. I blamed me for him having to suffer now. After I started to read more and more about sb this guilt finally faded. It’s still there…but only comes up in dark moments.

When ever you talk to people or other parents, hardly anyone knows about sb even though it’s after a heart disorder the second most common issue kids can have. There is such a need for information so I am grateful for this page!

July 14, 2015 - 8:28 am

Trudy - Thank you for sharing your wonderful blog with us. I too have a neurogenic bladder and bowel and I understand the fear and pain. I also write a blog. God bless you, Trudy

July 28, 2015 - 2:52 pm

Judy Gebeke - I was an RN for 46yrs. When I first started, Children with Spina Bifida usually died by age 4. My last 8yrs I worked in an orthopedic clinic and ran the Spina Bifida Clinic. What a joy it was to get to know the children and the families. I miss the clinic and the fun times with them. and, yes, I know that they have a long and hard row to hoe. God bless you and Chance.

December 30, 2016 - 3:19 pm

Tanya - Great blog! I have to disagree with the 70% rate… I find the math involved with Spina Bifida as highly questionable. I read an article citing how folic acid and earlier detection has changed the outcomes for Spina Bifida and yada yada… but what is not mentioned is the heavy increase of abortion and late term abortion. It’s awful for us to think about, but it’s happening at an increased rate. I was very healthy, ate organic, took my folic acid and prenatal vitamins, excercised… you name it! At our first ultrasound we found my sons back opening. Then we were repeatedly asked over and over at appointments whether we wanted to abort. I’m talking 6 times and the last time was at 5 months ???? Can you imagine?! I find it lazy that folic acid is still being pushed, when our foods are all full of folic acid. Even if you are poorly, American food has at least 400mg in it for your average daily meals/intake. They have not found anything specific to deter the prevalence of SB in MANY years. Aborting is not preventative. In fact… a lot of newer information is finding a disconnect between b6 and b9. Some of us are unable to convert the folic acid… therefore creating an even larger problem. I encourage us all to let go of the guilt and be more active in passing good information, like this blog! Your son is adorable and those forearm crutches are hard! Keep up the good work ??

October 29, 2017 - 12:00 am

gucci bags - It’s going to be end of mine day, except before finish I am reading
this fantastic piece of writing to increase my know-how.

August 9, 2018 - 2:06 am

Fiona - Amanda, THANK YOU for writing this validating piece. I’m in the bewildered and, at times, defensive 30%. And after seven years–I’m still seeking answers. But, in the meantime, my lovely little girl has gifted me with a higher purpose and helped uncover an untapped strength I never knew I had. I’m on an ongoing mission to “level the playing field” as much as I can for my child. In spite of her many surgeries, it’s my own flagging energy levels that present the most challenge these days (yeah, I often wondered if my daily vitamins and supplements simply evaporate immediately upon ingestion!!!). This kid, on the other hand, was born with an irrepressible spirit, and I suspect an invisible motor, too. ;-)

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