Sharing the Perfectly Imperfect Stories of Everyday Spina Bifida Warriors
Author: Kristin Marquis
Hey there! I'm Kristin. I live in the beautiful Seacoast town of Portsmouth, NH with my hubby Matt and our rescue pup Charlie. I was born with Spina Bifida and made this website in hopes that I would reach other people going through the same difficult things as I have and also to inspire others to embrace their differences and live Spina-Beautifully!
My daughter was born at 36 weeks. She has meylo and hydro.
She is a hoot and beautiful! When my wife and I found out around 22 weeks of our daughter’s condition it was a lot like all the other stories I have seen. They told us to abort without a second opinion.
However, with mixed emotions, we had our beauty and we knew we made the best decision! The past three years we have had our ups and downs but we have a lot of good times too!
I wouldn’t change it for the world! My daughter teaches us as much as we teach her!
This story is like so many others I hear. People are encouraged everyday (still) to abort their children because they have Spina Bifida and that just breaks my heart.
Hi, my name is Isabella and I was born with spina bifida occulta with tethered spine syndrome, which meant that my spinal cord was attached to a fat lump instead of being loose inside my spine. At 3 months old I underwent dangerous, corrective surgery. It changed my life! But my problems were not over… My condition was progressive and after a few years, I started having problems with my bladder muscles. I needed to carry supplies such as wipes, catheters, spare underwear, and liners. It didn’t take long before school friends started noticing. But what could I do to make carrying these necessary supplies more discreet? There was nothing on the market to meet my needs so my Mom, Teresa helped me and we decided to find a solution. After testing several prototypes, I had an idea! My Private Pocket Underwear was my tried and tested solution to carrying emergency supplies and back up underwear in a way that the other kids wouldn’t know, allowing me to enjoy life like other children. My family has made it their mission to make life better for many children with medical needs and incontinence problems. My Private Pocket is a range of underwear products designed especially for kids with incontinence problems so that they can be prepared for those little emergencies without embarrassment. Learn more at hiddenunderwear.com
Isabella’s resilience and innovative thinking is simply incredible! Her ability to take a difficult situation + turn it into something that works for her is amazing.
This is what people with disabilities are taught very early in life. It’s all about what you make of it!
I’m going to share with you a small part of my story. Yes, some of it is sad but I’m not sharing for you take have pity. I hope this part of my story is eye opening and educational to you. I hope it helps increase your awareness for the need for more funding and research on this disability.
My story begins back when I was 21. I got pregnant (OOPS) and decided I was going to do this! I had my regular doctors on my side and an OBGYN I had been seeing my whole life and their education on SB was me. Haha
I quickly got used to the idea of having a baby and fell madly in love with this little person inside of me. Even though for 6 months it was quite the challenge. I was VERY sick. My kidneys stopped working. I had tubes coming from my back to carry urine to bags strapped to my legs that would get clogged all the time and have to be replaced while I was awake…WIDE AWAKE.
My kidneys got so infected that I went into septic shock and could have died. But I didn’t! Finally, I was home feeling well and had a regular check up where the doctor told me there was no longer a heart beat. I was 6 months along… I couldn’t believe it. My body had failed me, I was less of a woman.
Now fast forward to when I was 34 and met my now husband. I informed him I thought I could not have children due to SB. Although he dreamed of having kids, he loved me more. WOW!
We married and decided to do some research to see what our options were. We were so lucky to find a whole new team and they had worked with pregnant SB women who had the same complications I had in the past and they had healthy babies. We went for it! During this pregnancy I was diagnosed with PTSD, was nervous and scared the entire time. Every minute was like a lifetime, but I did it! With an amazing team of doctors and my hubby supporting me, everything was OK. Don’t get me wrong, I still got very sick this time but the outcome was much better. Now I have the perfect little family and I feel like my body isn’t a failure. I am perfect… Perfectly imperfect as I like to say.
So, I can’t help but feel like this may have been avoided the first time if there was more research, more support. Had there been more shared amongst the medical community to help educate them about how to care for a pregnant Spina Bifida patient, we could have been a family of four.
This is one reason why we are here today to talk to you.
My Husband and I live in California (bay area). We have a precious little girl named Eliannie. She was born in September 2018:) at 38 weeks gestation via c-section (my water broke before our schedule c-section). We opted out from fetal surgery… our Drs recommended not to and our religious beliefs reassured us we didn’t need it. We found out she had SB very early on pregnancy around 13 weeks. In my second trimester we also found out she had clubbed feet and a small hole in her heart that closed a couple of weeks after birth. When she was born she had surgery to close and repair her mylo. We both stayed in the hospital for a month and recovered . I lost a lot of blood during my c-section and a blood clot traveled from my leg to my lung ( pulmonary embolism). I had two blood transfusions and was on blood thinner for 3 months to remove the blood clot. Meanwhile, Eliannie recovered very well and was discharged after a month in the hospital. She didn’t need a shunt or a catheter but needed months of serial casting to improve her clubbed feet. She also had both her achilles tendons cut to release her ankles and allow her feet to go flat. Now she uses AFOs to help her stand and we take them off when she crawls because the easily come off…. Fast forward to now she had many UTIS and we started to cath her, she doesn’t have sensation from her knees down and isn’t walking yet. We started using a gate trainer and we are still deciding what type of equipment will work best for her when she starts to walk. Eliannie is a very strong girl and we still have a lot to fight. We will fight through the rough times and hope for the brightest future ahead.
It sounds like Eliannie has an amazing support system that will help to provide her with a bright future and extremely positive outlook. I can’t wait to watch this amazing little fighter grow!
I’m Bethany. I’m 35, almost 36 years old from a small town in southwest Michigan. I am the middle of three kids, older sister, younger brother, and aunt of 4 great kiddos. I had a great childhood, but a lot of my high school years were spent in the hospital and on bed rest due to a pressure sore, so I was unable to participate in extracurricular activities. Fast forward to May of 2018, a friend of mine and my moms invited me to try CrossFit and Me, the girl who hates sports, fell in love. I belong to a wonderful supportive community now that cheers me on and helps me however possible. I am also stronger, more confident and more willing to try new things.
This year I started a blog website and Facebook page called Rollin With Bethany to shine a light on my life, accessibility issues and other issues that affect the disability community. The most important thing I want people to know about me and living with SB is that I am not to be pitied on and I do not live a sad life!
I love that Bethany has found something that gives her the confidence and support that she deserves. It is so important that we all find something in our lives that keeps us moving and challenges us mentally and physically. Be sure to follow Rolling with Bethany!
A: On YouTube @Daniellability or Instagram @Daniellability
My name is Danielle. I’m 29 years old, and I have Spina Bifida. I started my YouTube channel “Daniellability” and Instagram account @daniellability because I’m extremely passionate about raising awareness and opening up conversations surrounding disabilities. I want people to understand that they don’t need to shy away from or be uncomfortable around disabilities. I would also like to see disabilities included in conversations regarding diversity – in Hollywood, in modeling, in fashion, in storytelling, etc. When I was growing up, I rarely (if ever) saw anyone who looked like me in the movies, on the television, or in magazines. If I did, it was typically in a sad and depressing way. It’s time that the world sees people with disabilities as people who can be fashionable, interesting, vibrant, and important parts of society. I would also like to encourage fellow wheelchair users to be brave, innovative, and live life to the fullest. That includes showing parents of children with disabilities that their child can not only survive but THRIVE if given the proper tools.
Danielle is playing such an important role. She is a role model to all wheelchair users. She is brave, fashionable, and living life to the fullest!
Adalynn is almost 5 years old. She was born at 37 weeks via c-section. After her birth she had her back surgery (she has myelomeningocele) she also had a shunt placed a few days after her birth. She also has a cast in her right foot to help her arch. Everything went well until she was 9 months old and had a shunt revision. But she’s almost 5 now and no shunt problems. As she got older she got AFOS. She still couldn’t walk. She also went threw speech therapy and did some physical therapy. In April of 2017 she had a tendon release. After she was all healed she got her new braces (Afos & KAFOS.) These really helped her to start to walk. She is now independently walking! We do have to catch her every 3-4 hours and she’s about to start school! I’ve made sure to make her as independent as possible!
Adalynn has been through a lot but never stops smiling. I mean look at that beautiful smile!
A: On Instagram @mrscleghorn or on Facebook on a private page called Charlie’s Journey
Hey! I am Charlie’s mom I am not sure where to begin with this little mans story, but he has to be one of the happiest kids I know! Charlie has myelomenigcile and just celebrated his first birthday! He was born about a month early and spent a month in Children’s NICU! We are so thankful for all of our nurses and doctors! Charlie has no feeling below the knee. By the time he was 8 months old he could role is Bella’s Bumbas chair, at 9 months he received a stander, then at 12 months he got a gait trainer. He’s still trying to figure out the gait trainer but we hope he tackles it soon! Charlie is everyone’s favorite. He loves to say hey, color, play with play doh, and be outside! He loves to lead singing and sees no difference in anyone.
Isn’t Charlie just the cutest! It’s amazing to see him tackling anything that comes his way at such a young age! I think Charlie will grow up to conquer the world… Go Charlie!
A: I write for the Rolling Without Limits blog and have a Facebook page all about my life with an owner trained mobility service dog who is amazing and goofy! It’s called Life with Surf
I grew up like a fairly average kid. I went to public school, I danced from age 3 to 24, the last 10 years of which I was on a competition team and I taught dance to children with physical disabilities. I then went to college where I earned a BS in special education with a concentration in communication science and disorders before becoming a licensed Speech language pathology assistant. I married my husband on a cruise ship in 2014 (my dream wedding), and we have a 4 year old German Shepherd named Surf who I trained by myself to be my service dog.
Kaylee is living proof that no matter what, you can live your dreams and have a fulfilling life with Spina Bifida. From dancing competitively to her successful career and marriage, she is certainly living her best life!