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!

Monday, February 20, 2012

Madi :: Child with Spina Bifida

Three years ago I was 22 weeks pregnant and sitting in an ultrasound room waiting to hear if our newest blessing would be a boy or a girl. The nurse told us we were expecting a little princess, and we couldn’t be more excited! We already had an amazing little boy, Conner, and now we would have a little girl too! She also told us she saw some abnormalities, but since the doctor wasn’t there, she sent us home. We weren’t too worried about what the nurse found and just brushed it off. The next morning I got a call from the ultrasound doctor, and that’s when our lives got thrown upside down. He explained that Madi had the lemon sign, hydrocephalus, and that they couldn’t find some areas of her brain. The doctor refused to tell me what the results meant but referred us to a specialist. The specialist’s office said they couldn’t get us in for a month, and I was devastated. I couldn’t imagine going an entire month without knowing if my little girl would be ok, it was terrible! Thankfully our midwife was able to get us in sooner by finding an appointment at one of the specialist’s other offices, but I couldn’t wait that long without knowing what was going on. I was so afraid that Madi wouldn’t be able to make it full term and that I would never hold her in my arms. I felt so scared and alone. I cried, and cried, and then cried some more. It was awful. I prayed and told God that I could handle anything He threw our way, but that I just wanted to be able to hold her in my arms. I started searching online and came to the conclusion that she had spina bifida. I had never head of spina bifida before and had no idea what it meant, but felt better knowing what was going on.

When we got to the specialist’s office and had our level two ultrasound, the doctor confirmed what was seen in the level one ultrasound. He asked me if I knew what spina bifida was. I told him that I had looked online and had already determined that Madi had spina bifida. He asked us if we wanted to know our options and we told him that we loved our little girl just the way she was and that for us the only option was to give her life. He never pushed us, and for that, I was thankful! He told us that she had a type of spina bifida called myelomeningocele. He said that she actually did have all the areas of her brain, but that some were underdeveloped. He told us that many times other areas compensate for the lesser areas, and that she would most likely have average or above average intelligence. He explained that Madi had a pretty high lesion level and that she would most likely need a wheelchair. She also had a clubbed foot. Most importantly, though, he said that Madi had a great outcome and that there was no reason to think she wouldn’t live a long and happy life. I was SO relieved!!

After seeing the specialist we were referred to a neurosurgeon, a neonatologist, and were given a tour of the NICU at the local children’s hospital. We asked a lot of questions and did our best to prepare so that we could give Madi the best start at life. We talked to the neurosurgeon about the birth we wanted (we were told we had to have a c-section), about what to expect after she was born, and asked about a million other questions. He was very reassuring and was great about answering all of our questions.

At 36 weeks, they decided to induce us. Madi’s fluid levels were getting pretty
substantial and they were afraid that if they didn’t take her soon we would be risking long-term damage. We went in to have her, but she had other plans. After 36 hours in the hospital, 3 rounds of cervidil, a failed attempt at a Foley bulb, and very little sleep,she wasn’t budging! They said that we could have another week or a c-section, so we opted for another week (just as a note… traditionally they tell moms they need a c-section because it’s safer. Our neurogurgeon showed us all of the research and said that there was no proof that a c-section caused less damage or that it was better for the baby, even though Madi had the ‘open’ form of spina bifida. He said if her sack ruptured, it was no big deal, because he would be rupturing it anyway. We opted for a natural, vagnial birth so that I could be released quickly and be there with her during her surgery) When we went back at 37 weeks I had progressed over the span of the week so they started me on pitocin. Six hours (and about 4 pushes) later, she was here! She was so beautiful with a full head of dark hair and we were instantly in love. I got to have her on my chest for a while before they had to take her away, and I was in Heaven!! I spent that night with her in the NICU and the next morning she and David took an ambulance ride over to the children’s hospital. I got discharged shortly after and met up with them. Madi had her first surgery where they closed her back and inserted a VP shunt. Two hours after surgery I was able to hold her (with the help of our great nurses) and nurse her. She did so great! I requested a private room, which we got, and I was able to stay with her day and night. She recovered wonderfully and we were out in 5 days, which the hospital said was a record. I was so excited to be going home!

Life with Madi is a little different than I envisioned. I didn’t see therapy appointments, extra doctors appointments, surgeries, and wheelchairs in our future when I was dreaming about life with my new little girl. The truth is, though, that life is so much more amazing than I ever imagined too. Every time Madi accomplishes something that the doctors said she wouldn’t, my heart fills with pride. When I look at Madi, I don’t see the leg braces or the wheelchair. I don’t see the shunt or notice the lack of movement in her legs. When I look at Madi I see this amazing little blessing that is absolutely perfect. I see a little girl that has a magnetic personality; one that lights up a room as soon as she enters. I see a little girl who loves her life and who finds a way to accomplish any and everything she puts her mind to. When Madi laughs and smiles, everything is right in the world. She is so full of love and has added so much to our lives. I cannot imagine life without her.

In hindsight, I wish I would have saved myself all those tears and all that stress and, instead, would have just enjoyed my pregnancy. It’s funny to think that we used to be so afraid of what spina bifida would look like. Now we know just what it looks like; it looks like our beautiful daughter. We aren’t afraid of spina bifida any more. In fact, we are so not afraid of spina bifida that we are working on adopting a little girl, Ramya, who has spina bifida, from India. We know just how to help her and are looking forward to the day we can bring her home.

If you would like to read more about Madi, our adoption, or our family, please visit our blog at Our hope is to share with new parents what we wished we had known when we first found out about Madi; that one day the spina bifida won’t matter and that all that will matter is the immeasurable blessing that they were given. A blessing that will fill their lives with joy, love, and pride beyond what they could ever image.

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

Saturday, February 18, 2012

Emm :: Adult with Spina Bifida

I was born in 1934 and was not expected to live for about two weeks. I was always a sickly child but was able to do all the ordinary physical things being SB. For many a year my mother would show my back scar to people until I was about 11yrs old when I then started to object to having my pants pulled down and shown off to all and sundrie.

I never knew the what it was that had occured to me as a baby until I was in my 50s even though I repeatedly asked various doctors but they would not say. Then, after I had done quite a bit of research myself I came across an article on SB and realized that it was what I had.

As far as being able to take part in any sports etc. I was very much limited as I would soon get very bad back pain but on the whole my physical abilities were quite good. I have enjoyed an active life playing badminton, swimming and always enjoyed ballroom dancing too. It is only now in my later years that I have become disabled due to my spinal weakness mainly brought on by old age wear and tear.

Emm is a Mother of 3/gran of 7/ grtg ran of 4, and lives in Norfolk, England.

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

Thursday, February 16, 2012

Logan :: Child with Spina Bifida

Logan was born on October 17th, 2008. He weighed 6 lbs, 5 ounces and was 18 inches long! Logan was born with Spina Bifida: Myelomeningocele, Congenital Hydrocephalus, Chiari II Malformation. He has Asthma, GERD/Reflux and Hydronephrosis of the left kidney. Logan's SB level is at an L5/S1 (Lumbar 5/Sacral 1)...

On the day that Logan was born, my water had broke and I went into labor two & 1/2 weeks before my scheduled csection date, which was on November 4th! We lived almost 3 hours from the hospital that Logan was born at. We drove the 3 hours there. By the time we arrived to the hospital, I had been in labor almost 16 hours and the contractions hurt so much due to back labor.

I remember my husband being able to come into the room after they had laid me down and got me all secured and about 20 minutes later, I vaguely remember hearing the words, "And, we have a baby boy!" I remember waiting in agony for what seemed like forever to hear his little cry. When I finally heard it, tears streamed down my face and I passed out! They brought my husband over to where they brought Logan and let him see Logan's open lesion and then they carefully wrapped his opening and sent him on up to the NICU...

As I was in my room, I later learned that Logan had aspirated meconium and had to receive an NCPAP due to not being able to breathe, once he arrived up to the NICU. Logan went into surgery the next day to have his lesion closed up and after a day or two, I was finally allowed to go up to the NICU to see my precious, momma's boy!! The moment I saw him, lying there on his stomach- unable to move broke my heart but at the same time, I cried tears of joy. He was here and he was alive... (Not many people know this but before Logan was born, we almost lost him due to the Hydrocephalus growing too rapidly in his brain towards the end of my pregnancy.)

Logan spent the next 24 days in the NICU. He had his shunt placed in at one week old and was on & off oxygen.

Logan was released from the hospital on November 9th!! He came home in tow with oxygen and an apnea monitor. We would spend the next 3 months with many sleepness nights for fear that the apnea monitor wouldn't alert us if something went wrong! Logan would quit breathing while he was asleep, so there were nights where I was terrified to even sleep at all... In January 2009, Logan was officially weaned off oxygen!

Logan has had a total of 8 surgeries so far since birth... When he was about 5 months old, I had noticed that he was still breathing really rapidly. It just wasn't normal. So, I trusted my instinct and took him to our family doctor. We were referred to a Pulmonologist. It was then, that it was discovered that Logan had a paralyzed Diaphragm on his right side and would need surgery to have it fixed.

Later that year, Logan was hospitalized with Pneumonia for the first time about a month before his 1st birthday... And, then in February of 2010, he was hospitalized again for Pneumonia and it was then, that his Asthma was discovered.

Logan is now 3 years old and is a complete joy & light in our life!! He is sitting up, he is pushing himself up onto his hand and knees, commando crawls all over the place, rolls everywhere & is now working on his latest milestone: pushing himself up to a sitting position!! If I had known and was able to envision what life would be like as his mother, now almost 3 years later- I would not have been so scared or worried about what he would/would not do or if he'd even thrive or questioned the thought of a wheelchair, braces, catheters, meds or his needed therapies.

Logan is happy & healthy and lights up any room with his silly, little grin!! He doesn't talk, stand or even walk yet but none of that matters or is even an important factor. If I could do it all over again, I would not change a thing!

My blog: Growing from the Obstacles

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

Monday, February 13, 2012

Grayson :: Child with Spina Bifida

Grayson is 18 months old and has the brightest blue eyes ever! He was blessed to get his daddy's beautiful blue eyes.

Grayson was born with Spina Bifida at L5-S1, but that has never stopped him! He came out fiesty! Before I was even able to get to the NICU to see him, he was already showing the world his fighting personality. He kept trying to roll off his stomach and the nurses said he almost kicked himself over twice! He was so strong, able to lift his head and toss it from side to side. I remember being absolutely amazed when I got to spend a few minutes with him before being wheeled to my room to recover. After surgery they actually had to sedate him more because he kept pulling his iv's out and trying to roll off his stomach again. And he hasn't slowed down since!

To date Grayson hasn't missed a single milestone! Take that Spina Bifida! He rolled at 3 months, sat on his own at 6 months, began 4 point crawling at 9 months, pulling to stand at 10 months, cruising at 11 months, and began taking his first steps with a walker at 12 months. Then at 16 months he took his first independent step and at 17 months he could walk 5-10 feet independently. Now he's 18 months and can walk 10 feet smoothly and even return to standing on his own when he falls. Grayson wears afos because he has very little movement or muscles below the knees. Spina Bifida may be a part of him, but it most definitely does not define him!

Grayson is the most sweet-natured boy I've ever met. He loves giving hugs and kisses, even is a great snuggle bug when he's trying to get out of doing something (usually pt or bedtime). Grayson loves trucks, dinosaurs, and any kind of animal. He loves making animal sounds and can tell you what just about every farm animal says. A truck can't drive by us without him signing the sign for car and saying VROOM! Bath time is his favorite time of day. Just opening the bathroom door gets him all excited and he quickly goes to the bathroom squealing with joy. He loves reading books and climbing anything and everything. Grayson loves going to the park, the slide and the swings are his favorite. He's bit of a dare devil because he loves the big slides that make him go really fast or the curved ones. On the swings he loves being pushed really high, makes me a little nervous but he LOVES it. Grayson's favorite word right now is uh-oh. He says it all the time. He purposely throws things down just so he can say, "Uh-oh"! It's super cute! Grayson has the greatest belly laugh ever. I get so tickled when he finds something super funny. This week it was an Elmo beanie baby that kept falling over every time I sat him up. He got so tickled at this and it was absolutely adorable! I honestly can't believe how lucky we are to have been blessed with him!

my blog is:

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

Saturday, February 11, 2012

Ian :: Child with Spina Bifida

Ian was diagnosed with spina bifida when I was 17 weeks pregnant with him. He was born via c-section on his due date: 6/11/08. He had his sacral-level lesion closed the day after he was born, and a VP shunt placed at 7 days old. He left the NICU and went home at 10 days old. Neuro checks of his shunt showed that only one half of his brain was draining fluid, while the other half was retaining, so at 3 month he had a shunt revision to get the other side to drain as well. He has had no shunt problems or revisions since. Over the past two years, he's developed rather severe scoliosis, for which he wears a hard, plastic body brace until he can have surgery to correct it when he is older. Last August he got his first custom wheelchair and his first real taste of freedom; he loved it! This past September, Ian started Early Childhood four mornings a week through our school district, and also does PT, OT, and Speech therapy privately. At three and a half years old Ian only has a couple of words, but he knows many signs which he uses to communicate. He's a happy, smart, funny little boy who loves playing, technology, his cat, Baxter, his fish, Fred, and his baby sister, Lydia.

I write a blog about his adventure in his wheelchair, along with his life with spina bifida in general.

Thank you for sharing Ian's story Nicole! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

Friday, February 10, 2012

Connor :: Child with Spina Bifida

Connor Sternberg is a 9 year boy from Bethlehem Twp. PA with a spina bifida lesion located at the L4-L5 level. He and his mom were fortunate and blessed to qualify for experimental fetal surgery for spina bifida. Connor's surgery took place on February 13, 2003 at the Children's Hospital of Philadelphia and was performed by Dr. Adzick and Dr. Sutton's team. Connor was the team's 57th patient and his procedure took place a few days prior to the start of the National Institute of Health's randomized MOMS study.

Because of the experimental nature of the study at that time, Connor's mom was required to live near the hospital on mandatory bed rest for the remaining three months of her pregnancy. This time was made a little easier thanks to the welcoming people at the Philadelphia Ronald McDonald House, the very first house of its kind. Connor was delivered at 37 weeks.

Today, Connor enjoys many activities including soccer, dancing, acting and Cub Scouts. Connor has a slight amount of paralysis on the bottom of one foot and some weakness in the other, but physical therapy in his younger years has helped him figure out how to balance himself well. He occasionally wears ankle-foot orthotics (AFOs) for extra support of his ankles and feet when he has to do a lot of walking. Connor's public school discontinued his physical therapy sessions when he was in first grade.

God has blessed Connor with a huge personality, and the doctors at CHOP have helped give him the opportunity to dance, play soccer and enjoy an active life with friends and three older brothers. Fetal surgery also gave our family a chance to do something proactive for our child. We hope some day this could be the first option presented to parents that get Connor's diagnosis, rather than being encouraged to discontinue a pregnancy. Fetal surgery may not be right for everyone, but our hope is that after learning the real, potential benefits of the procedure, many more kids will get the opportunities Connor has had... just to experience life.

Here's a local PBS-TV story that was done about Connor in 2011:

Thank you for sharing Connor's story Frank! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

Wednesday, February 8, 2012

Bennett :: Child with Spina Bifida

Bennett is 8 months old. He sits independently, puts every toy in his mouth, laughs when you say “boo”, smiles at his big brother, waves and says “haaa” for “hi”, hates tummy time, and loves our dogs! He was born with spina bifida(myelomeningocele) at lesion level L5/S1. He had back closure surgery the day he was born, and had a shunt placed at 6 days old. He went to the doctor a lot those first few months. We had a lot of stressful, frightening days with the diagnosis at 18 weeks pregnant and during the NICU stay and surgeries, but life is back to normal now. Bennett is a happy, sweet, perfect little boy! I know that we will face some challenges along the way, but we are just trying to take everything one day at a time. And today is looking pretty good! Everyone has some type of challenges in life, and we are going to try to be thankful as much as possible because we are so lucky to have each other!

Blog is at

Thank you for sharing Bennett's story Mel! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

Tuesday, February 7, 2012

Kemper :: Child with Spina Bifida

Kemper is 14 months old, he has an upper sacral myelo, neurogenic bladder, hydronephrosis, and a VP shunt. He is blonde and has fickle hazel eyes, sometimes they're steely blue, other times golden or green. As I type this, my husband is reading a book to Kemper, who is turning the pages for him. He worked on his physical therapy exercises with him a little while ago. He ate some apples and ham for lunch. We have a typical family routine. We just had to adjust a few things for Kemper. That's really no big, considering that having a baby flips your life upside down anyway.

My husband and I got pregnant and because I was 35, we opted for some blood screenings. One came back with elevated levels that indicated Spina Bifida. Ultrasounds showed the brain's "lemon sign" of Spina Bifida. My doctor and a genetic counselor ushered us into a little room and told us about Kemper's SB. It was brutal, seriously, brutal. We asked a few questions and they told us about paralysis, bowel and bladder issues, mental retardation and shortened life expectancy. They offered us termination as an option. We went the next day to a doctor who had specialized in SB and worked with the MOMS trial doing fetal surgery to close the defect before birth. He told us we might not even know Kemper had Spina Bifida by the time he's two. His office gave us a book that hadn't had a new printing in 10 years about raising children with Spina Bifida. Even though we knew it was a bad idea, we took to Google and found some pretty grim stuff. Everything seemed vague and negative and broke our hearts. I was part of an online mom community and participated in a forum for women having babies the same month as me. Through that site I found the game changer. There is a forum for moms of babies with SB, and they were my strength, information, and the personal connection I needed to prepare for Kemper's birth. Now I'm part of a bigger online SB community on facebook and have made some wonderful friends and gotten some great tips and advice. I've had an opportunity to get to know some other moms with kids with SB and plan to attend the SB conference this year and meet some of them. Our area doesn't have an active SB chapter and plans to meet another family with a child with SB near us never came to fruition. Online is a great alternative to connect with the SB community and I think it's important for awareness! The blogs, videos, forums, groups, etc... all of them give a glimpse into the life of a family with a member who has SB. I think that's invaluable. I wish we'd had that when we were pregnant and truly unsure of what to expect. Providing that look, that opportunity, for people to see how boringly typical our lives are and how freakin' awesome Kemper is, is what I'm really passionate about. People with SB aren't defined by it.

We are fortunate enough to only have a three hour drive to Duke University Hospital, where Kemper was born. He was delivered via c-section, as the neurosurgeon that treats him didn't want any trauma from labor and delivery on his spine. My husband got a picture of him for me before they took him to the NICU. I wouldn't see him in person for seven hours, at which time I would go completely gaga in love with my squishy cheeked little baby. He had the closure surgery the next morning. Eight days later, he had to have a VP Shunt placed. A few days after that, the sutures on his back opened up, and so on and so on. It took us seven weeks to get him home. That was incredibly hard on our family and not a typical stay length for a baby with SB. We got him home and he got a GI bug and wound up back in the hospital. Then he got a UTI and spent more time in the hospital. He's had tests and studies on his head and kidneys and bladder, we go to SB clinic every so often, he had a shunt revision, and a hydrocele repair. It's been a long 14 months, but I swear this child had the hardest time with strep throat, not surgery. We would ask doctors, will he walk? Will he pee? Will he have kids? Will he do this, will he do that, will he????? They always told us we'd have to wait and see. Except on the walking part, he's well on his way, he cruises a lot. There is rarely a concrete answer in SB... and it's maddening. Learning to roll with it is what has saved my sanity. That and a counselor to talk to every so often. An objective person to talk to has been great for me.

Going Mamma Bear on people is something every mom does from time to time. Being in the position of new mom with a baby with special needs can amp up the sensitivity controls. It's hard to figure out where you are on the spectrum from hard exterior to heart on the sleeve. It's hard to know where to draw the line sometimes. I mean, I watch Tosh.0, which is broadly offensive, I'm supportive of the Campaign to End the R Word, and when people are insensitive I get pissed. The line is a little fluid for me that way. But you need to find somewhere to stick that line, or you end up angry and upset a lot. When nurses didn't properly put a barrier between Kemper's diaper area and his surgical wound, I went Mamma Bear. Justified. When a stranger asked me what was wrong with Kemper, I went a little Mamma Bear with a side of education. (I'm working on that.) Online, I'm learning to try and say my peace without getting offended. Sometimes that's really hard, but I'm working on it. I changed my way of thinking in a lot of ways after having a child with special needs. It happens, but it can't rule me or my family.

The children I've been so fortunate to become familiar with in the SB community have something in common. They are champions, brave and strong. They endure lots of doctor visits, surgery, procedures, tests, and other such unpleasant things with a great attitude. They work hard to achieve what other kids take for granted. They are great kids with big smiles. They have parents that love them, dreams to chase, and lives to touch. They don't need pity, they need understanding and an opportunity.

So that's kind of it in a nutshell, that's how my family came to be part of the SB community. These are some of the things I think are important. I have a blog,, a youtube, bethanyf75, and a facebook group,, to spread awareness and grow our community. Thanks for letting me share that with you.

Thank you for sharing Kemper's story Bethany! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

Sunday, February 5, 2012

Tanner :: Child with Spina Bifida

Although Tanner was born with Spina Bifida, it does not define him or represent who he is. He was simply born with it. Tanner is my first child, and finding out that he would be born with Spina Bifida, Hydrocephelus, and club feet scared me senseless. Looking back now, I have learned more about strength, courage, perseverance, and sheer determination from Tanner. I have also learned not to be shy, to speak up for myself and what my child needs, and defend what I believe in.

Tanner is now 3, and has the best personality. He is witty, funny, and quirky. He lights up a room with his smile, and his imagination soars. Tanner has had 6 surgeries so far and has been in casts for 18 weeks due to his club feet. Although he’s been through so much, he never lets it get him down! His favorite things are Thomas the Train, Buzz Lightyear, Lightening McQueen, Mickey Mouse, and the color green! Sounds pretty typical right?
He goes to preschool now for 3 hours a day, 3 days a week. His teacher says that she loves how independent he is, and wishes some of her "typical" kids could be more like him. That statement made me so proud to be his mom!
Tanner is also a big brother now, and he is the best big brother ever! Tanner already makes his 2 month old brother smile and laugh, Connor adores his big brother, and is always in a better mood when he is around. Tanner loves to help me take care of Connor. He will do anything I ask, and is always patient to wait when he needs something.

Although Tanner doesn't walk, he finds his own ways of doing things. Most people I've met perceive walking as the most important thing, but in the grand scheme of things, it’s really not. It's just a way that "most" people get around. I used to worry so much about Tanner not walking, but I no longer do because I know that he will be ok. Even if he uses a wheelchair, he is still my son & I love him to pieces! He has helped shape me into the person I am now, and I wouldn't change him or that for anything!

If you like to read more about Tanner's story, feel free to visit our family blog.

Thank you for sharing Tanner's story Star! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

Saturday, February 4, 2012

Tanya :: Adult with Spina Bifida

Tanya grew up in the small town of Menasha, Wisconsin. Born with Spina Bifida and Congenital Scoliosis, doctors encouraged her parents to place her in an institution, instead, they took her home. Tanya spent the first thirteen years of her life in and out of hospitals often with life threatening conditions. As a result, many had low expectations for her, but that did not discourage Tanya from living her life and doing what she wanted. Battling discrimination, especially in the school system, she graduated from high school in 1999 and received her Bachelor’s degree from the University of Wisconsin Oshkosh in Radio/TV/Film production and a minor in Communication.

Tanya resides in northeastern Wisconsin where she enjoys spending time with her nieces and nephews, as well as her dog Trevor and cat Emma.

Tanya uses her life experiences to motivate and inspire others to overcome their own adversities through public speaking engagements. If you would like to learn more about Tanya visit her website at

Thank you for sharing your story Tanya! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!

Sara :: Adult with Spina Bifida

I have SB L5 and hydrocephalus, I'm 30 and have never had a revision yet. I'm married and have two beautiful children and I never think my life is anything short of amazing. Sure it has its ups and downs made harder sometimes by the SB, but everybody has their issues, lol. My most stressful moments have nothing to do with SB.

Thank you for sharing your story Sara! If you or your child has Spina Bifida, and you would like to share your story, please email me at contact (at)!