My Story: Perfectly Imperfect, as I like to say!

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.

“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.”

Q: What is your SB warrior’s name?

A: Eliannie

Q: What type of SB does she have?

A: Myelomeningocele (no hydrocephalus)

Q:Where do you live?

A: California (Bay area)

Q: How can we continue to follow your story?

A:  Instagram @erica_eliannie

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 am also stronger, more confident and more willing to try new things. “

Q: What is your name?

A: Bethany

Q: How old are you?

A: 35 years old

Q: Where do you live?

A: Michigan

Q: How can we continue to follow your story?

A: or on Instagram @rollin_with_bethany & Rollin with Bethany on Facebook

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!

“I would also like to see disabilities included in conversations regarding diversity – in Hollywood, in modeling, in fashion, in storytelling, etc.”

Q: What is your name?

A: Danielle

Q: How old are you?

A: 29 years old

Q: How can we continue to follow your story?

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 about to start school. I’ve made sure to make her as independent as possible!”

Q: What is your SB Warrior’s name?

A: Adalynn

Q: How old is she?

A: 5 years old

Q: What type of SB does she have?

A: Myelomeningocele

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!

“Charlie is everyone’s favorite!”

Q: What is your SB warrior’s name?

A: Charlie

Q: How old is he?

A: 1 year old

Q: How can we continue to follow Charlie’s story?

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!

“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.”

Q: What is your name?

A: Kaylee

Q: What type of SB do you have?

A: Myelomeningocele L5- S1

Q: How can we continue to follow your story?

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

My service dog 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!

8 things you should know if you have Spina Bifida and are planning to get pregnant!

We are about a week away from my induction date and I wanted a place to write down all the things I have experienced through this amazing journey! I remember when my husband and I first started thinking about having children and feeling like there isn’t much info out there about women who have Spina Bifida and their pregnancy journeys. So, here is mine!

1.Do your research.

I know I probably don’t have to even tell you this. But, I have always struggled with finding well-educated Spina Bifida doctors and the thought of trusting a doctor to guide me on such a nerve-racking journey was scary. I also do not live in a state that has an adult Spina Bifida clinic, so we felt like we were on our own to find the best team of doctors to guide us. We got very lucky and a couple of doctors were recommended who have been fabulous and have gotten us to the finish line. I am seeing a doctor that specializes in Maternal Fetal Medicine and high risk pregnancies. The best way to describe her is like an OBGYN on steroids. High risk doctors are even more educated in the field of complicated pregnancies and are more equipped for these sort of unique circumstances. So, do your research, ask around, and don’t settle until you are happy with who is going to care for you and your little bundle of joy!

2. Prepare emotionally, too!

If you’re anything like me – always searching for ways to be in control of what is happening – you might want to get right with the idea that you are going to be totally out of control of what happens for the next 9 months. Your body is going to go through some weird changes, everyday will bring something new, and that “plan” you have is going to go right out the window. When we started trying to get pregnant we thought it would be so easy but…it took a year. I also really wanted to have a C-section and come to find out, that is most likely not possible. Not to mention I have had a few hospital stays that obviously I wasn’t happy about. So, I would highly recommend finding an outlet that will help you embrace the positive in your pregnancy and embrace these uncontrollable things. For me this was seeking out a therapist who has been my light.

3. “Normal” pregnant women are more prone to infections so, guess what….

Having Spina Bifida and being pregnant may bring on bladder/kidney infections (it certainly did for me). Because your baby is going to take up some room in there and given your unique make-up, you may suffer from many infections during your pregnancy. I have an augmented bladder and reflux in both my kidneys on a normal day so, you can only imagine what adding a growing human being in there will do to that already screwed up area! Don’t worry though; if you listen to your body and catch these infections early they won’t hurt the baby or mommy. You are more limited in what you can take for antibiotics while pregnant so be sure to consult with infectious diseases and your doctor to see what is best.

Oh, and I almost forgot to mention… get ready to pee your pants! Your urinary incontinence is only going to get worse as your growing fetus gets larger. It’s not fun but I’ve been told that once the baby is born everything will go back to the way it was.

4. You will be considered “high risk”.

As I mentioned before, I am seeing a high risk specialist; not your regular OBGYN. This was recommended by my regular OBGYN. They explained an OBGYN goes to school to learn how to care for and deliver your “normal” pregnancies and high risk doctors are more educated to specialize in helping pregnant women who have unique situations such as Spina Bifida, like me! Basically, Maternal Fetal Medicine doctors like the one I am seeing subspecialize within the field of obstetrics to care for high risk pregnancies.

Things you can expect to experience when being considered “high risk”:

  • Getting ultrasounds more often than normal (best part)
  • Having appointments with your doctor every 3 weeks and as you approach your due date those visits will become even more frequent (every 2 weeks and eventually once a week)
  • You may be asked if you’d like to have additional genetic testing done. We decided this wasn’t for us. But, it is something that can determine birth defects early on and possibly help your doctors prepare better for your child/pregnancy.

5. C-section or natural?

When I first found out I was pregnant I wondered if I would be able to deliver the baby naturally. If you have Spina Bifida you know that your muscles “down there” aren’t as strong as most women. So, I thought for sure they would have me plan a C-section. Come to find out, the general rule of thumb seems to be that if you can push to have a bowel movement, you can deliver a baby!

6. Can you have an epidural?

I’m sure a lot of you with Spina Bifida have had tethered spinal cord surgery like I have. This means that your spinal cord might end in a different area then most people depending on how stretched it got before it was untethered. You will most likely need to have an MRI on your lower back (if you haven’t already) to determine if an epidural is even an option for you. If it isn’t, there are other option for pain relief during labor such as IV medications or some of that laughing gas they gave you as a kid at the dentist!

7. Make sure you have an amazing support system.

I have had such a great support system along the way of family, friends and doctors. Even though I sometimes lose my way and my mind goes a little crazy with the what ifs, I always have these people to bring me back and lift me up. My husband has been the biggest support. We made sure that from day one we were on the same page about having children and starting this journey together. I can’t say enough about how encouraging he has been in reminding me that even though I have Spina Bifida, my body is doing exactly what it is supposed to do and that although this pregnancy isn’t text book perfect, it is perfect for us! I often pinch myself wondering how I got so lucky!

8. Enjoy it!

Don’t forget that all that you may go through and all that you experience is for this little miracle that you will be holding in no time. Every doctor’s appointment, every medical bill, every infection is totally worth the end result! So, do yourself a favor and remember to embrace every second of it. It will go by fast and will be the most amazing thing you have ever done!

We are ready to welcome our little lady in just about 10 days! We are being induced on 4/17/19 and couldn’t be more excited!

Louise Victoria Marquis, you are so loved, so strong, and our greatest journey yet!

All of these amazing pictures were taken by the very talented Melissa Koren

“We don’t let anything stop us from living and enjoying our lives together!”

Q: What is your name?

A: Kim Burdick & Ben Bowman

Q: How old are you?

A: Kim 44 and Ben 43 Ben

Q: What kind of SB do you have?

A: Myelomeningocele

Q: How can we continue to follow your story?

A: We both have Facebook accounts and Ben has a mower racing page since he races lawnmowers every summers at a go cart track near us. We don’t let anything stop us from living our lives together and enjoying our lives. 

Ben and I first met each other at Shriners Hospital for Children as young teens. We were inpatients at the same time. After I was released I returned to the hospital to attend a dance with Ben. He then took me to my senior prom. After high school we lost touch with each other. 20+ years later we found each other again on Facebook in a group for adults with SB. I asked him some identifying questions to make sure that it was really him. After I was convinced that I was really talking to him I identified myself. We ended up talking for 9 hours that first night and have been together ever since. I think we’ve been together nearly 5 years now.

I loved hearing how Spina Bifida brought these two together! You never know how things will work miracles in your life. It’s pretty cool!