Category Archives: spina bifida

The public school system reminded us of their own disability

Nearly six years ago we learned our son would be born with spina bifida. One of our biggest fears had come true – we would have a child who was considered by society as “disabled”. So many fears we once had have come true. But Chance continues to remind us – his disability won’t hold […]

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June 1, 2016 - 6:38 pm

Mary Sproles Martin - Amanda,

Joseph went through public schools here in Waynesboro. He had an IEP and went to the nurse’s bathroom to cath and deal with colostomy issues. He was in a wheelchair as well and the teachers knew he was to be allowed to go to the nurse whenever he needed. He also had access to water at all times.

If I can help, call or email me.

I get it.

June 1, 2016 - 6:40 pm

CT_Mom on BabyCenter - Oh, Amanda, I am so sorry. I had to fight a smaller fight to get April into public pre-school, and that was hard enough! (her issue was that they claimed a lift-equipped bus couldn’t drive on a city road to reach our driveway. But every other vehicle somehow managed it? And there were battles from/with/over the school nurse to the point that she no longer works in April’s school. At all.)

One tip to pass along: I’ve found it is VERY helpful to have April in the room with me during all meetings. It keeps the adults from the school on their better behavior, and for those who don’t know her already, they can see with their own eyes how normal she is, despite the volume of medical information that comes with her.

Contact your representatives. Local level. State level. Federal level. It helps. It really, truly helps, if you can get their offices working on your side. Those other districts around you didn’t just magically decide to be supportive. Having someone bigger and stronger roaring on your behalf can help, especially with schools.

August 15, 2016 - 3:52 pm

Jennifer Wray - As someone who grew up with disabilities, I can totally relate. I was born with several medical issues and it was a fight for my mom to get me into a normal public school…just because I’m physically different doesn’t mean I’m intellectually any less capable than a “normal” student. We finally got me enrolled, and the fight still wasn’t over. The school tried to tell my mom she should take me out of school, and gave her info for schools that can “meet the needs” of a disabled child. Thank God my mom did not take that as an answer and fought ’till the end for me. Sure, school was a little more difficult for me…I missed a lot due to my doctors appointments and surgeries. And sometimes the school had to make special accomidations for me. But I graduated on time with a good GPA and now I’m in college doing just fine. Your son sounds like a fighter and like a strong little boy! Keep it up because you’re doing something right. Never let him lose his spirit. It won’t be easy, but It’ll be worth it! Good luck with everything!

June 2, 2018 - 4:34 pm

Leah - Oh god.

I’m nervous about this for multiple reasons. I am both excited and nervous about the day that Logan will start school for the first time in a few years time. When I have to attend such meetings I plan on having him present for them in the room as well as his twin sister. Also I will have to get the contact information for my state and local representative just in case I need it. Hopefully I’ll be listened to and rightfully respected as a valuable member of the IEP team. This is the only part of being a SB mom which I detest wholly.


Help me support Redefining Spina Bifida + a photo session giveaway!

“It’s not how much we give but how much love we put into giving” ~Mother Teresa So here’s the deal….it’s GIVING TUESDAY, right…and I can’t let the day pass me by without “giving” – but an even more amazing thing would be encouraging others to help me give. I’m giving away an opportunity to win […]

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Why my child doesn’t suffer from spina bifida

Recently the media shared a story of the Pope blessing a teenager with spina bifida. Seeing the gesture was touching but a short time later when shared by the media I was saddened to see the headlines read, “Touching moment Pope Francis blesses girl, 17, in a wheelchair who is suffering from spina bifida and […]

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October 22, 2015 - 11:41 am

Taryn Kim Westover - Thank you so much for this post! I too am living with Spina Bifida.
I was born with it in 1955 back when doctors didn’t know much about it at all. I had surgery to close up my spine when I was 5 days old. The doctors didn’t talk about the challenges we would face because they didn’t expect me to live. The only encouragement they gave my parents was that at the most I MIGHT live to see my 18th birthday.
Well, the Lord Willing, 12 days from now I will celebrate my 60th birthday AND what I call my 42 year miracle. I have lived 42 years longer than the doctors said I would.
I also have only had the one surgery at 5 days old. All other surgeries I have had have not been related to the Spina Bifida.
I get around in a motorized wheelchair and have had the blessing and privilege of traveling more places and seeing more things than most people on two good legs!
My main challenge is people who don’t understand my capabilities and who don’t understand disabled people and what they need in the way of accommodations/accessibility.
Thank you again for this post!

October 22, 2015 - 11:53 pm

Melissa Cork - Best article ever. I’m 32 years old (from Australia). I always cringe when people think you ‘suffer’ from Spina Bifida. People always want to feel sorry for you. But why? We are who we are. Well done a great article. Thank you for sharing your story.

October 26, 2015 - 11:56 pm

Kristy - I love your attitude. My son has a couple of medical conditions and I think it is so important to share photos and information so everyone can better understand that life is not your diagnosis.

October 30, 2015 - 8:35 pm

Rudy Bazan - Una de mis mellizas vive con espina bífida, es increíble su fortaleza, nos transmite su alegría por la vida. Acaban de cumplir su primer año de vida.

November 23, 2015 - 4:07 pm

Juan Esteban Salas - A great inspirational site! Not just for the amazing photos , but also for the spirit within your words! Your story is an example of what living with spina bifida must be, both for the people with the condition and their families.

I’m a pediatric neurosurgeon who treats fetal and neonatal patients with spina bifida in Colombia, and let me tell you this: you taught me something that can’t be learned from a medical book, and from now, my patients will never “suffer” from spina bifida. THANK YOU!

June 2, 2018 - 4:51 pm

Leah - My son and daughter are going to be 4 in December. Both of them are going to start school for the first time September of 2019. I’m nervous and excited at the same time. We are going to the first meeting next week to discuss his disability and what he is predicted to need as well. I have fully prepared for the meeting by conducting research online and talking to other parents of SB children. From that I have sat down at my computer and typed up a list of questions to ask at the meeting. I also emailed everyone a copy of my list of questions and printed out a copy just in case.

What other questions should I ask at the meeting? If I think of any other questions I will add it to my list of questions to ask at the meeting.

May 7, 2020 - 7:52 am

2015 Spina Bifida Awareness Campaign

“Hardship often prepares an ordinary person for an extraordinary destiny.” ~C.S. Lewis Just over five years ago we learned our son Chance would be born with spina bifida. We were told then that he would be born with complications that would require a lifetime of care – and that so much would be unknown until […]

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October 8, 2015 - 3:14 am

Deborah Paul - You have outdone yourself again!
The banners are beautiful and truly from the heart!

October 10, 2015 - 4:52 pm

Brandi Harris - I have 13 year old twins girls, one of them was born with Spina Bifida. The doctors tried to persuade us to cut off her life line due to her birth defects, she wouldn’t be able to do much. God gave us these special girls for a reason. We absolutely can’t imagine our life without her. She is such. Blessing to everyone e she meets with her huge smile and loving personality.

October 21, 2015 - 12:24 am

Marcia Walker - Please send me the link to donate.

June 2, 2020 - 12:29 pm - Why do some people have good lives and others don’t? I am a realist so I don’t believe in any supernatural stuff and I don’t have confidence in any religious beliefs.
You could call me a hardcore Atheist/Skeptic.
What I sometimes wonder is the reason why do certain folks have
it so excellent in life while others don’t? The only realistic description I could think of is
normally: 1. Random Luck (lucky… show more A few of it is
circumstances of birth and host to birth other is free will and what you perform to overcome any handicaps you may have been born with.
Appear at Hawkins who was simply stricken with a horrible
disease but became an excellent impact on the 20th hundred years thinking and in to
the 21st C and FDR who was struck down with polio but continued to become a great president and player on the
globe stage.

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 […]

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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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