Category Archives: Updates

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.

To the mother who is considering aborting her baby with spina bifida

Over four years ago when we considered giving up on our son Chance’s life, I wrote openly about the emotions and decisions we were faced with. In part it helped me cope but I also did so for support. Instead, majority of the responses lead an attack that helped me realize just how touchy of […]

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What this wheelchair means

My dearest Chance Matthew, This week you got your first wheelchair. I write you as I am still coping with the thoughts of what this means for you and for our family. In the past few months we have struggled with this decision – to give in and request a wheelchair for you. Before you were […]

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May 29, 2014 - 8:53 pm

Amory Anderson - So beautifully said.
Couldn’t agree more!
Been there, too, mama :)

May 29, 2014 - 9:02 pm

Susie - Don’t ever give up parents!!!! I am 52 years old and I use a wheelchair. I was born with myelomingocele. She can do this!!!!! YOU can too!!!!!! :)!!!!! Using a wheelchair is not a death sentence but freedom!!!!! God gave us this. NOONE knows why, but it is doable!!! YOU ARE all in my prayers.

May 29, 2014 - 11:39 pm

Kristen Gilbert - This so where we are at right now with our 3 year old Nathan. The struggles and amount of work put into learning to walk is something many do not understand. I so feel every word you wrote. I have felt all of those same feelings. Thanks for posting!

Kennedy: Another spina bifida miracle

Nearly 3 years ago I knew spina bifida was about to change my life, but I didn’t quite realize just how much of an impact it would make…not just on my and my family’s lives but on the lives of so many others. This silly little idea to capture moments with other families affected by […]

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January 30, 2014 - 9:44 am

Matt - Amanda, what a talented photographer you are. Of course, you’re only as good as the subject :) What wonderful shots you got of some of my favorite people in the world. And such a beautiful girl who is lucky to have such great parents! Love this!

February 5, 2015 - 12:44 pm

Eve Collins - Did she have spina bifida?

February 5, 2015 - 12:46 pm

Eve - Kennedy is SOOO cute????

February 6, 2015 - 12:37 pm

Eve - I meant to put Kennedy is SOOOO cute!!!!!!????

February 6, 2015 - 12:38 pm

Eve - Kennedy is SOOOOO cute!!!!! Is what I meant to put.

February 6, 2015 - 12:39 pm

Bailey - What a great photographer you are Amanda! Love thoe pictures of Kennedy!

Newborn twins: Rebecca & Sarah

Recently I spent a little time with newborn twins, Rebecca and Sarah. I’ve photographed a handful of twins over the last five years but these two precious babies were the first identical twins. They were super sweet and tiny, only 4 & 5 lbs, so we had fun capturing a few of their newborn moments. […]

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