Thursday, May 17, 2012

Autumn :: Child with Spina Bifida

Autumn was diagnosed with Spina Bifida when I was 20 weeks pregnant. Her level is L4-L5, she has a VP shunt, Arnold Chiari II Malformation, central apnea, tracheotomy, and a gastro-button. I am actually nervous to share Autumn's story to new parents learning their child has SB because of all the "complications" that come with her story.

She's in the rare 5% that has severe ACll issues. We did not know this until after her birth. We figured we would have the typical hospital stay with her back closure & shunt & then home to do all the things that come along with SB like cathing, therapy, etc. During her first week of life she would stop breathing & we learned she would need a trach & ventilator to keep her alive & get her home. After a 4 month hosptal stay, she was finally able to come home. Even though my fears of the "worst case scenerio" came true they aren't what I expected. I have a 3 year old who can not walk or talk, can't eat by mouth, needs a breathing machine to keep her alive while she sleeps, & is developmentally like a 12 month old. This may sound sad or depressing but it's the COMPLETE opposite. She may do things differently than the average child but she finds a way to communicate to us without words and seems more "normal" than not. Autumn can army crawl all over the place, he uses her wheelchair to get into things and pop wheelies. She LOVES to watch TV & look through books. My daughter is my hero. She's my inspiration. She has spunk personality. She is strong-willed & stubborn just like her momma. She is the HAPPIEST little girl & you will rarely EVER see her cry. My worst fears about SB turned out to be my greatest blessing. Autumn's life is proof that the worst case scenerios drs give turns out to be not so bad afterall. ;)

To read more about Autumn, visit their family blog at

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Monday, May 14, 2012

Michelle :: Adult with Spina Bifida

I was born with Myelomeningocele (L4/L5) and hydrocephalus on April 3, 1971. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or due to untreated hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having spina bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

Thank you for sharing your story, Michelle! We still need more stories, click here to share yours!

Wednesday, May 9, 2012

Hayden :: Teenager with Spina Bifida

Hayden (age 17) enjoys participating in numerous recreational activities including sledge hockey, hunting, and working out. He aspires to be a taxidermist. Hayden lives by the saying "everyone has challenges, mine are just different" and has a great sense of humour.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Monday, May 7, 2012

Jonah :: Child with Spina Bifida

We found out or son Jonah would have Spina Bifida on our very first ultrasound at 19 weeks. A month later we went to the specialist and got some great news...the lesion was low (L5/S1)! Our doctor said "If you have to have Spina Bifida this is the one you want." All our appointments from there just got better and better! On July 5th 2011 Jonah came into the world via C-section weighing 7lbs 2oz and 22in. long! When he was born we found out he was soo tightly squeezed in the womb that his legs were up in his face. With a little physical therapy his legs went back to normal in less than two months. Two days after birth he had his first surgery to fix his back and and seven days after that he had his shunt placed. We spent a total of almost 11 days in the NICU.

A month after our stay in the NICU Jonah's shunt became clogged and he had to go in for another surgery to revise it. Now we have had no more shunt issues! At about 3 months Jonah's legs were casted to help with his clubbed feet. One foot was worse than the other and that one was casted up past the knee..the other only past the ankle. He had to have casts for about 3 months and now we are on to the boots with the bar between for 16 hours a day. We visit the Spina Bifida Clinic once every 6 months and see over 16 specialists!

Now Jonah is almost 8 months old! He's weighing over 22lbs and over 27in long. He goes to the bathroom on his own and has absolutely no issues there. Jonah has been eating solids now for over 3 months and he eats 3-4 meals a day! He learned how to sit and roll at 6 months and now stands with some help. Pretty soon he will be fitted for his AFOs to help him stand more. He recieves physical and occupational therapy through the Birth to 3 program and they come to our home every Tuesday.

We have been soo blessed to have such a smooth journey! Honestly there are days when I forget he even has Spina Bifida and strangers never notice it either because he is soo good natured! Jonah loves to laugh, sit, babble and scream Da-Da! I have never met a happier baby in my life! He is our little hero and I am HONORED to have such a beautiful blessing!

To read more about Jonah, visit his website at

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Wednesday, April 25, 2012

Harmanie :: Adult with Spina Bifida

Harmanie (age 29) is recently married and has worked hard to make her home accessible. She loves to dance and uses the skills and knowledge from her University education to contribute extensively to her community.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Wednesday, April 11, 2012

Ryan :: Adult with Spina Bifida

Ryan (age 35) lives independently in an accessible condo downtown near his workplace. Since graduating from Grant MacEwan Community College, Ryan continues to work hard and has succeeded in the workplace. He enjoys traveling, watching sports and spending time with family.

This story is one of a series of stories and videos submitted by the Spina Bifida & Hydrocephalus Association of Northern Alberta. Thank you so much.

Wednesday, April 4, 2012

Roman :: Child with Spina Bifida

Now that Roman is quickly approaching his 3rd birthday, I am constantly looking back and reminiscing on our journey. I never thought we would reach this point. I certainly never thought we would be this normal!

Two weeks before my due date, I had an ultrasound that showed Roman's Spina Bifida. I lived in front of the computer after that day. The way I saw it, I had two weeks to prepare myself, my husband and our 2 year old daughter for an event that would change our lives forever.

I was devastated. I woke up every morning to the painful reminder that this wasn't a dream. I went to bed every night hopeless and beaten. Exhausted from worry and despair. My one lingering thought was, "Why my baby?" After thinking of all of the horrible things I've done in my life and negotiating with Karma and God; I decided this wasn't how this is going to happen. Roman, wasn't going to be born a "devastating event" Roman was going to be born to two parents who, for a whole year, begged for him. And now he's ours.

His birth and the months following were a whirlwind. Roman was born weight 8 pounds 9 ounces, and 201/4 long. He was perfect. He was amazing and he was mine.

The day after he was born he had back closure surgery, a week later he had the surgery repeated, because it wouldn't heal, and was still leaking. A few weeks after we got home, he had his shunt placed, When he was four months old he had emergency surgery to repair a rare heart deformity called a double aortic arch, At some point he had a shunt revision surgery and we trailed off with a couple ear tube surgeries, adenoid removal and a double leg casting for a tendon release.

10 surgeries before he was 2 years old. I thought, "This is our life now." I thought we would live in and out of the hospital, I thought we would fight off stares and points and whispers, I thought we would neglect our daughter, I thought we would have machines and tubes and I am incredibly happy to report that I thought wrong.

Life with a child with Spina Bifida is unpredictable, it's an emotional roller-coaster, It's messy and it's scary at times. Hell, terrifying.
But it's the life handed to some of us, and for me. I don't have time to get caught up in the "why me" and "how come" and the "I can't do this" Because I've got play dates to attend, a park to explore and this coloring book isn't going to scribble in itself.

If I could go back and change Roman's diagnosis, of course I would. I wouldn't wish this pain on anybody and certainly not my child. But I can't do that and can't dwell on the idea, so instead I advocate and I talk, and talk, and talk.

Check out their family blog at

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Monday, March 12, 2012

Kumaka :: Child with Spina Bifida

We found out that our precious son would have Spina Bifida at 19 weeks. We went to that ultrasound to find out the gender of our baby, and we got a whole lot more than we bargained for. We were told our "options" multiple times, until we were more sick about the word termination than the diagnosis. We struggled with finding the understanding of the enormity of what we would be facing. It was so overwhelming. But once he was born, he was perfect in our eyes. He's had quite a few challenges and hurdles to jump over. He's had multiple surgeries, mostly on his feet which are proving to be quite difficult to correct. He is a full time crazy wheelchair boy, but is learning to walk with RGO's. At the moment he is in a spica cast because both of his hips were out of socket and he had bilateral hip surgery to fix that. He's had heel cord lengthening multiple times, as well as a couple of bony procedures on his feet. He has battled pneumonia, and multiple UTI's.

But his sweet spirit, his courageous attitude makes him a warrior. He does not really think he's different. He's five right now and has only once mentioned the fact that he can't walk. He has four brothers who shower attention on him, and he really is a part of the crew. Their friends adore him....and love him and play with him. He is so very awesome.....he amazes me every single day.

He is a huge blessing in our lives and we wouldn't change a thing about him. Our only wish is that he didn't have to go through quite so much...but really that is what makes Kumaka who he is. His full name is Kumakalehua...which is Hawaiian. It means "the Strength or Foundation of the home". He is that for us. We love him more than anything.

Check out their family blog at

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Friday, March 9, 2012

Kelsey :: Child with Spina Bifida

I remember it like it was yesterday... The doctor walked in to the examination room and blurted out, your child has Hydrocephalus and possible Spina Bifida. These are three words I had never heard before, and three words I would never forget. I had no idea that they would become part of my daily vocubulary, along with phrases like, neurogenic bladder, VP shunt, kyphosis, and so many other medical terms. That day was in February 1993.

Fast forward nearly 19 years later. Many other words have entered my vocabulary... Wonderful and loving daughter, hard-working student, wheelchair athlete, caregiver to a sweet service dog named Emelia.

Reflecting on the last 19 years of my life, my daughter, Kelsey, has brought me joy beyond measure. While I didn't have the same experiences as I did with my other child, it didn't diminish the excitement of seeing her walk for the first time using a walker, playing her first wheelchair basketball game, winning her first wheelchair racing medal, and becoming a National Powerlifting Champion. Who knew that on that cold February day in 1993, I would ever have been where I am now?

As my daughter prepares for college, we both reflect on her struggles with school, learning self-care, laughing at mishaps while traveling, and all the wonderful experiences she has had, and is yet to have.

I worry about her as she goes off on her own; will people take advantage of her situation, will her mild learning disabilities get in the way of her career aspirations, will she find love? Whatever life throws at her, I know that she will always have the support of her family and friends, and she will succeed, in her own way.

Check out their website at

Thank you for sharing Kelsey's story Michell! We still need more stories, click here to share yours!

Wednesday, March 7, 2012

Charlotte :: Child with Spina Bifida

Charlotte Adara was born April 19th 2010 at the University of California San Francisco. We were part of the MOMS Program. Our before story is quite eventful so I think I'll share that before I get to the reason for this post.

We found out Charlotte was a girl on December 28th. The ultrasound tech found something wrong but didn't tell us. They told Matthew and I that they needed to send me to a specialist because they didn't get enough measurements. I had no idea so I went to this appointment by myself. I should have figured something was up when the office they sent me to had to do with genetics and birth defects.... but nothing. Then they did the ultrasound and said there is something wrong with your babies back. And her head has what we call the Lemon sign. They said she has Spina Bifida which I had no idea what it was or what that meant. The doctor was very gracious and explained a few things. She said I had some options. First of all Termination which I said no way. Just to go as is and deliver and go from there or that there is a study being done for this where they go in and close the babies back before they are born. Anyway so much info and I was in shock. They called Matthew on his last day of work as we were planning on moving to VA the next week. He came down cause the doctor didn't think I should drive home in my state. I was definitely in shock. So she gave us some info and the number for the study. We then had like 5 days before Matthew left for VA and I was to move into my parents house while he looked for houses.

It was a stressful 5 days. Anyway Matthew left and I didn't know what I was going to do. But I did call the MOMS people and did the interview over the phone. I felt good about it and so Matthew asked his work if he could telecommute to do the evaluation. They said yes. We got to San Francisco on January 24th had the 2 days of evaluation on the 25 and 26th where we were bombarded with info. The MRI showed a really bad Chiari Malformation. That is what made the final YES in my mind to do the study. If that could be fixed I would do it. Those few minutes after we said yes were crazy waiting to know if we were going to stay for the next 3 months or be going back to VA and AZ. But we ended up staying. Matthew called his work and said he'd be telecommuting for the next 3 months. And they were good with that. What a blessing. We had the 27th all do ourselves and then on the 28th I was at the hospital having surgery. I think I was in the hospital till the 31st. I wanted to get out of there! I hate hospital beds. Anyway we set up camp at the Family House. We enjoyed our time there. We ate at some awesome places. Met some amazing kids at the family house. We were there with another couple that were part of the trial but got chosen for the surgery after. Then I was still there. and Nicole Dyer came. She had her surgery and then I went in to have Charlotte 3 days earlier then planned. WE had my c-section scheduled for April 22 but at my regular visit on the 19th at the Antenatal testing they saw I was contracting regularly and sent me on my way to the hospital. We then had Charlotte that afternoon. She was amazing! Beautiful! She came to earth at 6 lbs 13 ozs at 20 inches long. She was in the Nicu for a week. I think that was only cause we could leave without the VCUG and they only do those on the day she was born. So we had to wait a week to leave.

The Neuro said that if Charlotte wasn't part of the trial that he would have put a shunt in her before we left but wanted to give us the benefit of the doubt to see if she would stabilize. But that wasn't in our cards. We saw the Neuro back in AZ several times and then got the shunt put in May 14. That was a difficult surgery to get through. She looked horrible coming out of surgery. But It saved her life. We got a VP Programmable Shunt. Adult sized. So that hopefully she won't need a new one...

That has been the only surgery for Charlotte She had great leg movement when she was born. All the doctors that saw her were amazed. Her scar on her back looks more like a birthmark then a hole that was fixed. She walks with her walker and does really well just walking holding onto my hand. We just got for arm crutches for her to try out. So far she's not a fan. I'm not sure she'll need them but they are there if she decides they are better then her walker.

Her level is L4-S2. She's got movement all over. She's got KAFOs to stabilize her ankles. We Cath her 4 times a day and she's on Ditropan. At our 12 month evaluation at CHOP they found a Cyst on her upper thoracic spine that we are now watching with MRI. So far so good. Charlotte will be 2 in April. We can't wait to go back to San Fran for the 30 month visit. I just spoke with Rachel there at UCSF and they will accommodate us coming over the holidays and fly us from VA to CA back to AZ to visit my family! Awesome!

Charlotte amazes us everyday. She's so sweet. She's my cuddle bug. She LOVES BABIES! which I'm thankful for as we're getting ready for another one soon. Charlotte doesn't like crawling down the stairs anymore because she wants to walk down them. Scary I know but she won't do it without me. Soon she'll be able to do it herself. She has Physical Therapy twice a month and Developmental Therapy once a month.

I Love my sweet Charlotte. I can't believe anyone would consider ending such a wonderful spirit just cause it will be HARD.

Check Out Our Family Blog at TEAMWEIR.BLOGSPOT.COM

Thank you for sharing Charlotte's story Heather! We still need more stories, click here to share yours!

Monday, March 5, 2012

Chase :: Child with Spina Bifida

We were told at 22 weeks, after a level 2 ultrasound and an MRI, that our son had Cerebellar Hypoplasia. We were devastated since we were told that having this was rare and that we wouldn’t know the outcome until after he was born.
On October 17th, my OB decided that due to low growth they would prefer to induce and on October 19, 2011 my son Chase was born. My son was born with a Myelomeningocele which explained the hypoplasia. The Myelomeningocele was causing a Chairi II malformation.

Chase had his defect closed on October 20th. He then had an EVD drain placed on October 25th. On November 1st he had his programmable vp shunt placed. He was in and out of the hospital after that for wound issues and shunt issues. He had his first shunt revision January 4th of this year.

He has been doing well so far. His neurosurgeon has turned the pressure down in his shunt from .5 to 1.0 to 1.5 just yesterday. His neurosurgeon is also pleased with the movement of his toes feet and legs; he is pretty ticklish! He has also been hitting his milestones so far. We may be naive, but we think he will show Spina Bifida who’s boss!

This is our blog:

Thank you for sharing Chase's story Emily! We still need more stories, click here to share yours!

Friday, March 2, 2012

Caleb :: Child with Spina Bifida

In the summer of 2004, Glenn and I decided it was time to start a family. I had actually been ready for a baby for some time but Glenn wasn't quite there yet. I was thrilled when he said he was finally ready and I immediately made a doctor's appointment, got off the pill, and started taking prenatals. I was ready!

In December of 2004 I got pregnant! I remember seeing that faint pink line while standing in my bathroom and I just cried and cried. Absolute joy. I took 3 more pregnancy tests just to be sure! There was no doubt, I was pregnant.

Somewhere around 15 weeks, I went to the doctor to have blood work done. I didn't think anything of it, it never occurred to me that something could be wrong. The blood work came back "concerning" so I was sent to a perinatologist for further testing. I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read aloud to us. It was such a blur, like everything was happening in slow motion. The doctor did an ultrasound and showed us the opening in Caleb's spine and how the ventricles in his head were enlarged. He told us that our son would likely have significant cognitive delays, would not walk, have no quality of life and might not even survive. And in the next breath, he offered termination. We were offered termination several times and repeatedly told that we had to make the decision quickly because I was almost halfway through the pregnancy. Well, that was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I will never forget March 22, 2005. I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months. Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could. Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him. I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

This picture was taken right after Caleb was born, this was the very first time I saw him.

This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!

I just think this picture is so sweet.

Finally Home!

So that pretty much sums up the start of Caleb's journey. It is now a 6 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.

Caleb is now 6 years old and in Kindergarten. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair for longer distances because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to do crafts. He loves to read and he is really a fantastic reader. He loves to color and write and, for some reason, he is desperate to learn cursive (he has to wait until 3rd grade for that!) He plays baseball through the Miracle League and he absolutely loves it. He is a wonderful big brother to Benjamin.

You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I

be? Life won't always be easy for him, but life isn't always easy for any of us. This kid is leaving a mark on this world and the world is better for it.

Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB. I don't walk this road alone and that makes all the difference.

Check out their blog at Blessings Beyond Measure

Thank you for sharing Caleb's story Cassie! We still need more stories, click here to share yours!

Wednesday, February 29, 2012

Rylee Jo :: Child with Spina Bifida

My daughter's name is Rylee Jo. She is 11-months-old and she has SB. L4 Myelomeningocele. SHe has had 4 surgeries so far. The first one was when she was first born (the myelo repair), the second was at 19 days old (VP shunt), the third was at two months old (Shunt revision) and the final one was a couple weeks ago (vesicostomy). We were cathing 6x a day but since her last surgery we no longer what to do this. She has paralysis from the knees down. She is not currently crawling, standing, or obviously, walking.

We did not know about her SB until I delivered. At first we were really scared (mostly of the unknown).

But now, 11 months later, we are overjoyed to have her in our lives. She is the strongest, sweetest person I know. God truly gave me a gift when He gave me her.

Visit their blog at Rylee Jo's Story

Thank you for sharing Rylee Jo's story Erica! We still need more stories, click here to share yours!

Monday, February 27, 2012

Nathaniel :: Child with Spina Bifida

Nathaniel is 11 years old, and was born with Spina Bifida.

I found out at my 16 week ultrasound about the Spina Bifida. Eleven years ago I began I journey that I was TERRIFIED of. Mostly I was terrified because no one had given me any HOPE that my baby would have a good life.

Nathaniel, June 30, 2000: 2 days old

But you know what? They were ALL wrong!

As scared as I was of Spina Bifida, I have since learned it's just a different way of life.

Nathaniel on his first birthday, just hours out of major surgery

But it is still life at its fullest!

Nathaniel, ~18 months old

Little did I know eleven years ago today what an AMAZING child Nathaniel would be.

Take That! Walking on the beach at 3.5 with NO walker. He had JUST graduated from the walker.

Little did I know that he would teach me far more than I could EVER teach him!

The little guy I was told over and over again would not walk.... playing soccer in all of his glory!

Nat doing his FAVORITE thing... surfing! Summer 2011

Many would say that our life is hard. I would counter that we all have a journey that we are on, and many of those journeys are hard, ours is no different. I will be the first to admit that we deal with a LOT, but there is never a promise that we won't deal with a lot in this life. I feel blessed to be dealing with it for such an amazing child!

Nathaniel has had to deal with many things throughout his life that I wouldn't have wished on him, yet each time we go through something we ALL grow stronger and learn from it. Nathaniel is a INTEGRAL part of our family and we love him for being him!

To us, Spina Bifida is a part of our life, but there is SO MUCH MORE to our life than just Spina Bifida! We live for love, for joy and for family, just like anyone else!

Read more about Nathaniel on his family blog: Simply Soares

Thank you for sharing Nathaniel's story with us Gretchen! We still need stories, please ADD YOURS!

Friday, February 24, 2012

Anika :: Child with Spina Bifida

Anika was born on 10 November 2010 in Nelspruit Mediclinic, Mpumalanga, South Africa with undiagnosed Spina Bifida (Myelomeningocele at L3).

The morning after birth she was taken to Unitas Hospital in Pretoria, Gauteng, by ambulance, where she was admitted to the neonatal intensive care unit. The neurosurgeon, Dr Joachim Mennen, performed an operation on her the following day in order to close the hole in her back from which the spinal cord protruded. The operation was successful and she was kept in ICU for observation. Three days later brain fluid started building up, which caused pressure on the brain (hydrocephalus). Dr Mennen suggested that a third ventriculostomy be performed to open the natural drainage mechanism of the brain.

This operation was unsuccessful and a shunt implant was done 4 days later. The shunt is embedded in the skull and drains brain fluid to the abdomen where it is absorbed. Anika’s diagnosis at this stage was that the minimal movement in her legs was due to reflexes only and that she’ll never have any control over her legs. She was released a week later to recover at home. We started with Babygym, physiotherapy and occupational therapy immediately. After a month of therapy it became evident that she definitely gained partial control over her legs.

In March 2011 her physiotherapist, Marlene Steyn, noticed symptoms of shunt failure and a CT scan was performed in Nelspruit. The neurosurgeon in Nelspruit diagnosed Chiari Malformation and not a shunt failure and suggested that we go to Pretoria for a decompression operation. A MRI scan was done in Pretoria and two specialists confirmed that it’s not Chiari Malformation but that the shunt malfunctioned (a very rare occurrence as they usually just get blocked). A shunt replacement was done on the same day by Dr Mennen.

Back in Nelspruit Anika was progressing well. She managed to sit on her own and roll over. She reached all her milestones on time, except for pulling herself up to a standing position and walking.

In June a series of interventions began in order to straighten her clubfeet. They operated on both her feet and she had to go back to theatre several times to manipulate her feet by using the Ponseti casting method.

At the time that she was 9 months old, she had already been to theatre 10 times and counting. She has been so strong throughout the whole process. Her life is being bombarded with therapy and operations, but Anika smiles all the way to hospital and back. She has really been an inspiration to everybody around her. She also started to move around the floor (her own way of crawling) in October 2011, we are so proud of her! Now in February 2012 she is crawling on her hands and knees, it’s absolutely amazing!

In future she will face more operations and challenges, but in the meanwhile, she is just another little baby girl, full of joy and laughter – who would like to have a fair chance in life... and that’s what we will give to her – every fighting chance we can!

Please visit Anika's website at

Thank you for sharing Anika's story with us Annél! We still need stories, please ADD YOURS!

Wednesday, February 22, 2012

Jeanne :: Adult with Spina Bifida

Hi! My name is Jeanne Knapp. I am 35 years old and I have a disability called Spina Bifida. I can walk with a quad cane for the most part but I use a power chair, manual wheelchair, or a walker for long distance. I walk with my knees bent so my knees started hurting in 2002 after I had worked for the Shawnee Mission School District for a year which is why I started using wheelchairs, etc. I have no braces on my legs but I do have inserts in my shoes so I have to wear shoes that are big enough for my inserts (a women's size 6).

My insides are the parts of me that have been affected by SB the most. I have nerve damage to the bladder, kidneys, and intestines. I have a shunt in the left side of my head which is a small fiberglass pump that drains excess fluid from the head (a condition called hydrocephalus) but my shunt probably isn't needed anymore. I haven't had any problems with it since I was 5 or so.

Even with all of my problems (irritable bowel, knee pain, etc.) I accepted Christ as my Savior at age 4 or 5 and God had seen me through all of them and given me joy. I still live at home with Mom and Dad and have been surrounded with loving, supportive family and friends. I was able to get through K-12 and graduated with honors from high school and college (two college degrees: associates in applied science with an emphasis in business office management and a bachelors in the area of early childhood special education).

God has seen fit to give me opportunities to date and have as much of a normal life as any single lady would have as possible. I would like to get married and raise a family (adopting kids, not having kids naturally due to the health issue I deal with). However, if God does not want me to get married then I will try to be content with whatever God allows me to experience in life.

Jeanne's blog is at Jeanne's Life with Spina Bifida

Thank you for sharing your story Jeanne! We still need more stories, click here to share yours!