Category Archives: Updates

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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An update as we await surgery #14

My dearest Chance, You are still so young and I’m not sure you’ll fully understand the news we will have to prepare you for – but it only seems appropriate to express my heart as we must now also share this news with our family and friends and the many people who have come to […]

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November 14, 2015 - 12:18 am

Deb Heming - He is so brave and strong and such a cutie. He is also blessed with very loving parents. We will pray for God’s wisdom for the surgeons & for a good outcome. Blessings, Deb Heming (Chris’ mom)

November 14, 2015 - 2:20 pm

Cynthia Downey - I knew you were talking to my sister Marilyn about this tethered cord issue, another battle for this little guy. He is so brave and hopefully, this will be the right surgery to conquer the battle of the headaches and nausea. Our thoughts and prayers are with you during this time.

November 15, 2015 - 11:01 pm

Amanda Saulter - Chance is such an inspiration. He will get through this surgery and continue to bless us all with that amazing smile. We’ll be thinking of you all during this time and pray for optimal results. Much Love, Amanda & Jaxon

November 23, 2015 - 9:27 am

Elizabeth Eminisor - We will be saying prayers for Chance.

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. ;-)

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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June 9, 2016 - 9:53 am

Corey - My wife and I was notified yesterday that our son will have spina bifida. Test show that our son apparently has one of the serious cases of spina bifida. Reading this has helped a lot and to also show that we aren’t alone. We have the same tough decision to make.

July 7, 2016 - 9:01 am

Debora - Congratulations for the post Amanda, I think the world needs a lot more people to enlighten the great potential of kids with spina bifida and other conditions. I went through the same situation that you did, also feared so much, but also wanted so much to keep my baby. Like you, I also looked for every single updated piece of information I could get, and I was also advised to consult with a paediatric neurosurgeon – we were lucky to have an extremely reknowned and competent one. Only in my situation, the MRI looked completely different from your case. Whereas he reassured us that individuals with SB had a great potential and so much progress had happened in improving their quality of life (even commenting that one of his best friends, a University professor, had spina bifida), he also told us that unfortunately ours was a worst case scenario. He said the damage to the brain stem caused by the Chiari II was so severe that it was almost certain that our baby would not be able to breathe nor eat on her own among countless other severe impairments. He said that, contrary to the vast majority of cases he had, he expected her to live only for a few days (even with all hospital assistance) or for a couple of years in the best case scenario for her. Facing that, we decided to have a termination, and we do not regret it. Based on the best and most accurate medical evidence, we would have to watch our daughter agonize until she found peace in a very early and cruel death. I don’t share this here to discourage those mums faced with this impossible decision, just the opposite: before this MRI, I was resolved to raise this child and to fight for her, and even now that I don’t have her, this cause became a fight of mine. I totally agree with you that the information given to parents is precarious: our paediatric neurosurgeon said that only a few per cent of parents look for this kind of specialist advice, and most seem to decide right away after the first diagnosis, without further investigation. After living what I have lived, I am past feeling comfortable in judging people for whatever they decide – as long as this was a really informed decision.

September 3, 2016 - 2:07 pm

Beth - I was never upset with you for considering termination. It was the taunting of the sb group and your poll. Your poll. Then you named him chance. I see you’ve come around a little, but wow. You came and told us that women messaged you wishing they’d aborted.

October 22, 2016 - 3:58 pm

Dale Prince - My wife and I just learned as of this week at 22 weeks that our son has Spina bifida with hydrocephalus. She’s so worried about our own relationship at this point and cannot focus on what matters with this child. I’m totally set on fathering this child and have made contacts with Houston Texas Children’s for fetal surgery. I’m so scared that she’s going to choose abortion rather than life.

November 7, 2016 - 6:46 pm

Mikasta Moody - As a wife of a man who has Spina Bifida I have learned from him that his life hasn’t always been eady. He’s had pain, surgeries, and other issues but he has also had a happy, fulfilling life, is a sports buff, and has even played some basketball. Personally, I’m happy he has had a chance at life.

October 31, 2017 - 7:33 pm

Ashley lange - Are you still available to help me?

May 27, 2018 - 10:00 am

Leah - As a mom of twins one of which has SB I would add another useful tip.

Find support.
Join a Internet support group or meet up with other SB kids and families in your area.

May 27, 2018 - 10:15 am

Leah - I found a BabyCenter group of SB parents. It’s been useful over the past two years after diagnosis day. They have been the best resource for our family apart from our medical team who have taken care of our daughter with SB. I didn’t bother to call our SB clinic or local chapter of our SB association because the information is woefully inaccurate.

Plus information overload. FS was not a option for us and I briefly considered termination after diagnosis day. Our little gal with SB and clubbed feet is a bright and healthy baby. She is exactly like her twin brother (Laurel’s partner in mischief making). Both of them are currently 18 months old now.

As her mom I am amazed by the love and support she inspires amongst our extended family. Coworkers who have met my children are always amazed at our little gal and what she can actually do. She has some physical impairments but I feel she is on track with her cognitive and speech development.

Her small motor skills are assumed to be above average as well. My partner worries about her but I reassure him she will be fine.

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!

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