Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words
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 […]
My 23 yr old daughter w/sb and I thank you for this beautifully written piece.
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.
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 child..my 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.
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.
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! 
Excellent response!!! My 24 years old son with SB is a professional translator. They can do it!!
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!
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!
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
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.
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 ??
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.
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. 
by Amanda Kern
13 comments