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

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

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: littlechasebryan.blogspot.com

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

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

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

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

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

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

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

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 www.getmegoing.co.za

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

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

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