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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!

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!

Q: What is your name?

A: Meetra Nahavandi and Danny Toppan Robello

Q: How old are you?

A: Meetra is 29

Q: How can we continue to follow your story?

A: on Instagram: @my_beautiful_bifida_life and on YouTube: “Kiddo and Old Fart”

Hello! My name is Meetra Nahavandi and I am a huge fan! My fiance and I were in a long distance relationship with Meetra being in WI and Danny being in Brazil. We met on IG, and were both born with Spina Bifida.

We have a drive to better our health and inspire others that they can do anything they put their minds to despite having a physical disability. We hope to truly make a difference in the world and spread the word of awareness. We would love to meet others with and without disabilities, to share all our stories and inspire the world to not give up despite challenges we may face.

We have begun to create apparel and mugs with our logo #riseabove which is based on both disabilities and fitness aspects.  We would love to spread our mission around the world and inspire and educate others who may not be familiar with various disabilities.  We are training for Tough Mudder and Red bull 400!

I love how this couple was brought together to make such an impact. Some might call it fate! By sharing their stories on a daily basis (the good and the not so good) they are spreading awareness to everyone and making quite the impact. So, do yourselves a favor and check em out!

Oh how time flies! Thirty-five years ago, things were very different and I have seen the effects technology has had on society. As a teacher, I see how much my students have available to them at their fingertips instantaneously. And as a mother, I see how far technology has taken us in the field of medicine.

In 1983, when our daughter Kristin was born, we had no “heads up” that she had a neural tube  defect, Spina Bifida. In fact, my six month ultrasound looked normal and I felt good throughout the pregnancy, short of a bit of morning sickness in the first trimester. Fast forward to today, Kristin is 23 weeks pregnant and I am astonished at what I’ve been able to see on a 3D ultrasound and at the number of studies that can be done to rule out various birth defects and complications. Thanks goodness for all of this as 13 years ago, Kristin lost our first grandchild, Xavier, at 22 weeks due to complications she had due to kidney infections related to her Spina Bifida.

I’m not going to lie, I wasn’t sure she should get pregnant again, but I realize the reason behind that thought was selfish. Kristin was so sick during that first pregnancy and devastated after her loss that I just did not want to see her go through a possible repeat. But all looks good this time around and fingers crossed, Kristin will stay healthy throughout the pregnancy.

I know we raised an independent young woman who knows what she wants and goes for it and when she and our son-in-law, Matt announced they would be trying to get pregnant, I had to breathe deep and accept. They have done everything conceivable (like the pun!) to make sure all goes well this time around and with God’s blessings, we will be welcoming Louise Victoria Marquis into the world in late April/early May! Mimi and Pops could not be happier or more proud of what our “kids” have accomplished. They are a team with a great support system in place (both family and medical professionals) and I trust in what is to be!

Kristin has asked me to share a bit about our experience having and raising a child with Spina Bifida, so here goes . . . When I went into labor on the morning of the 4th of July (Kristin came in with a “bang”), I called my OB-GYN to let him now how far apart my contractions were and I was told to head to the hospital. All was going along as planned.

After an exam revealed Kristin just didn’t want to get in the right position, I learned I would be having a C-section delivery. We knew this might be the case — Kristin’s head was up in my rib cage throughout the last trimester. I remember being on the operating table waiting for my doctor having tremendous back labor and the nurses helping me on to my side rubbing my back. My husband, Mark, was there for the delivery and the “screen” was up so we did not see what was going on with the procedure.

We got the news we had a girl, but not much more was said except that Mark (my husband) was escorted out of the room with the nurses/doctor along with our baby girl. I lay there unaware of what was happening and hearing a lot of suctioning of fluids before I was stitched up and eventually brought up to my room.

I honestly don’t remember a lot of what happened after that except that we were given a crash course on Spina Bifida (or myelomeningocele). Kristin was brought into my room in an incubator (or so it looked like one) and I was able to place my hand in to touch hers, but not able to hold her. Her little sac at the base of her spine was wrapped in what looked like saran wrap and we were told she would be traveling by ambulance to Dartmouth Hitchcock Hospital to undergo surgery to close the opening. We could expect her to be there while I recouped from my surgery. Mark was told he could follow the ambulance and before I knew it, our little baby girl and my husband were off to Lebanon.

At the time, a woman undergoing a C-section spent about 5 days in the hospital, so needless to say, I was not happy that this most precious time in my life did not involve holding and nursing my newborn. The hospital staff was great and I was able to pump my breast milk to freeze for later use. They arranged for a Spina Bifida Clinic coordinator from DHMC to visit with us for a full briefing on just how our “boo-boo” baby (as Mark lovingly referred) was doing. She had seen Kristin and we felt an instant connection — she seemed to know just what we needed to hear.

I do remember that on the day I delivered and before going to Dartmouth, my pediatrician (who had been called in after the delivery) did tell us that he felt Kristin would be able to walk as she was kicking her feet and she had a low opening (L5-S1). I really didn’t understand why he was saying this as I had no idea she might not walk. Kristin was able to come home just one week after she was born, but we were told we would be seeing the range of specialists at DHMC Spina Bifida clinic monthly.

There were many issues with bladder infections requiring surgeries to reimplant her ureters at 2 and 3 years old. As she grew, her bladder didn’t and could only hold 50 ccs of urine, so she eventually had a bladder augmentation. A tethered spinal cord required surgery and as an adult, she had a bowel obstruction that needed repair. We have gone through a lot, but I truly believe God doesn’t give you more than you can handle. Mark and I handled it together and we count our blessings each day for what we have.

We have had our struggles having a child with a serious birth defect, but no outward signs of it. Her lack of bowel and bladder control caused issues early in her school years. We had a school nurse who would not catheterize Kristin and so I had to leave work to go to school to do so. Kristin learned to cath herself at a very early age, but this created issues with her “pretending” she was doing it behind the nurses’ closed bathroom door. She just wanted to be normal. I also recall her Readiness teacher greeting us at an Open House with, “Oh, you’re the parents of THAT child” and she proceeded to question why Kristin had accidents and was unaware.

In 5th grade, when she carried around her supplies in a little purse, kids were curious and that was when she wanted to explain (with her teacher and the nurse) to her class why. I was there and so proud of her for being able to speak up for herself and not be ashamed of who she is.

Today, when I read Kristin’s blog posts, I am brought to tears at the independent, loving, compassionate person she is and how sharing her story has helped her heal. I trust that in sharing her story and in my sharing ours, that someone else going through similar experiences can relate and understand they’re not alone. Things do work out; God does not give you more than you can handle; and this too shall pass.

 

 

Q: What is your name?

A: Sarah Haywood

Q: How old are you?

A: 30 years old

Q:What type of SB do you have?

A: L4/L5 Myelomeningocele

Q: How can we continue to follow your story?

A: on FB Sarah Haywood or Instagram @sarahdhaywood

Like many Spina Bifida stories, my diagnosis was a complete surprise to my parents. Born in rural Maine in 1989, there were few resources and we immediately had to adjust to life between Vassalboro, Maine and Boston Children’s Hospital. My parents were quick to become experts in Spina Bifida, various medical terminology, and exactly how many cups of coffee it took to get from our home to Boston before sunrise. When I was very little, my parents would wake me up in the night and do what they would call “bundle the babe,” which meant wrapping me up like a burrito in blankets and buckling me into the backseat for the long drive. We almost always stopped at the same places on the ride down, and depending on how the appointment or surgery went, we’d try to schedule in a fun stop on the way home.

I developed quite an infamous reputation at Children’s Hospital, mainly because I was so incredibly stubborn and wanted to do my best to live as “normal” of a life as I could. One particular experience involves me staying up all night, cutting a cast off my leg with a pair of scissors and a dull steak knife. It was safe to say my parents were not pleased the next morning when we had to make the quick 4-hour drive back south to replace it. At age 14 I was determined to walk without braces, and was lucky enough to have several surgeries that enabled me to do so. My teenage years were filled with makeup homework, bone infections, stomach surgeries and a lot of frustration. Despite missing half of high school, I worked hard and managed to graduate on time with my peers, scrambling together an A average that I was incredibly proud of. I was desperate to still live a “normal” life, and tried to hide my scars as much as I could.

After high school, the real world was a punch to the face. I was still struggling with osteomyelitis, and couldn’t quite gain control of what was happening to my body. I ended up with several partial toe amputations and plastic surgeries to heal chronic wounds on my feet. All my friends had gone off to college and I was at home trying to figure out what medical care meant past age 18. This was when I finally began to accept that this whole “spina bifida” thing was a part of me but that I was strong enough to fight back. I started taking better care of my body – I checked my feet regularly, I took probiotics to fight my stomach problems, I became more aware of new research being done. When I was 19, I moved 6,000 miles away from home to Long Beach, California and figured out how to get insurance and doctors. I hiked, biked, road-tripped, rock-climbed, swam and went to college. When I moved back to Maine I began volunteering with my local SBA organization and ended up speaking at several conferences in Massachusetts, and one in Utah that I was fortunate enough to be able to travel to.

I am now 30 years old and have found myself working at a job I love in the craft beer world. I am in a loving relationship with a man who has been incredibly supportive (he witnessed a small ER visit involving 3 MRIs and a spinal tap when we first started dating, so he passed the test very quickly!) and I am serving on a couple of boards with the National Spina Bifida Association. In the last two years I have visited Canada, Europe and Africa, and have done several solo road trips within the United States. I graduated college with Bachelor of Science in Community Recreation and interned at a summer camp in Hawaii. I spent my entire childhood being told by doctors that I would never walk on my own, or be independent, or graduate college. I am extremely proud to tell everyone that I have Spina Bifida now, and hope to make more connections with others who have shared the same struggles. I am thrilled that we are making such great progress with adult care for those with Spina Bifida and will look forward to having a voice in creating new resources for future generations.

I was thrilled to see another woman (almost the same age as myself) with Spina Bifida, sharing her story!  Sarah has made it so far and crushed all the odds.  The work she has done to help raise awareness is incredible!  What an awesome story!

I made it! I didn’t mean to have such negative thoughts but, after losing my first child it was hard to believe that the same thing wouldn’t happen again. I was skeptical and had it in my mind that if I reached 22 weeks (which is when I had my still-birth) that just maybe this was actually going to have a different outcome. Well, here I’am…I’m 23 weeks and with just a few complications along the way everything is going perfectly. When I think back to the beginning of this pregnancy I felt like “Geez Kristin, think more positively”. I have to admit, it is very hard to do so after being dealt such an awful hand so long ago. I mean, of course everything is fine, this is how it was meant to be!

When I met my husband Matt, I actually told him that I wasn’t sure I’d ever have children of my own. I thought that he needed to know that very early on incase that changed his mind about dating me. That combined with the Spina Bifida conversation was not easy for me to tell him. I felt like it was a double whamy and was truly worried he would run in the other direction. Of course he didn’t (again, another “Geez Kristin” moment) and that’s when I knew he really was a keeper. He was super supportive! Fast forward a year after we got married, we decided to start seeking medical advice to see if trying to get pregnant was even a good idea.

I live in New Hampshire where there are absolutely no Spina Bifida clinics in sight for adults. However, I had heard from a friend that there were amazing doctors at Brigham & Women’s Hospital (B&W) in Boston, MA. I decided to basically create my very own Spina Bifida clinic by first finding a urologist in the same hospital to take over my regular care and go from there. After plenty of research, I eventually got the recommendation from a fellow Spina Bifida warrior to see Dr. Eswara at B&W. Truthfully, I was relieved to be leaving my current doctor since he just never seemed to be a great fit for me. The first time I met Dr. Eswara I instantly felt at home; he was so knowledgeable in adults with Spina Bifida, very kind and empathetic to our concerns about trying to have a baby. He talked about how women with Spina Bifida are already prone to more UTI’s but pregnant women with Spina Bifida are at an even higher risk. He also assured us that there was no harm in trying and that he would take very good care of us; that was the first time I had ever smiled after losing my son and thinking about trying again.

Recap: About 13 years ago I was pregnant with a boy and during that pregnancy my kidney’s and bladder basically completely failed to do their job. I ended up having many, many severe kidney infections that led to having drains placed and strong antibiotics just to keep me alive. Unfortunately, that led to my baby’s demise.  (check out my previous blog to learn more)

So, you can see why it was so important for me to have the best Urologist on board during this pregnancy. Having someone like Dr. Eswara who had our back in trying to do this was the first step. After we met with Dr. Eswara, we quickly realized through much research that it was time to also meet with Maternal Fetal Medicine (MFM) as this would be considered a high risk pregnancy. My regular OBGYN described it as – everyone in the medical field has to do a residency in OBGYN, but those who work at MFM have decided to become the experts and a concentration in less common and/or more rare, risky areas of Gynecology. Basically, our regular OBGYN is able to care for a “regular pregnancy”, but for someone with a birth defect, they would gladly transfer me to the experts. So, we called to schedule our first consultation and drove the hour to Boston to meet with Dr. Nicole Smith at MFM. My mom even made the trip with us as I really needed all my favorite people with me. I needed to be reassured by her that I was safe. I mean let’s face it, sometimes you just need your mom.

Well, we were blown away by Dr. Smith’s knowledge of women with Spina Bifida having babies, all the different outcomes and methods they implemented in the past to make sure these women had healthy, happy babies.

“My Colleague and I could write a case study based on the amount of women we have treated with Spina Bifida and are pregnant” – Dr. Nicole Smith

My jaw dropped… We left that appointment much more hopeful than ever before. Dr. Smith assured us that she would do everything in her power to make sure we had a happy outcome this time and was confident that everything would be OK. She said we could have a baby! I really couldn’t believe it. I had all these experts telling us to go for it! I thought to myself, “Do they really understand what happened last time? Are they crazy?” Of course, this is why I had my mom and husband by my side every step of the way. They were there to talk me off the ledge over a slice of pizza, and in that moment we decided we were definitely going to do this!

We found out we were pregnant in August of 2018 and balled our eyes out! I was shaking like a leaf when I told my hubby. I was so happy I could explode but also extremely scared – as I mentioned before I had my doubts – At about 12 weeks I ended up with a bad kidney infection. You see, I already have reflux (hydronephrosis) in both my kidneys, and it seems as though adding a small human to the mix can be irritating to these sassy kidney’s! I was hospitalized for 4 days and some serious antibiotics, which everyone thought would help, but two weeks later, I was rushed to the hospital again for the same problem – come to find out, I had a kidney stone (normal in any pregnancy) that was harboring the bad bacteria, which the antibiotics don’t always kill the first treatment – amazing how much you learn spending 9 days in the Hospital! Just call me Dr. Marquis! My spirits were down a little, but I had my husband constantly telling me that I was stronger than whatever was trying to defeat me, that as a team and with the doctors we have, we were in great hands. After those two bumps in the road it has been smooth sailing (I’m nervous even writing that down that I might jinx it). Today I’m 23 weeks and just had a urine culture come back NORMAL! That hasn’t happened since the beginning of this pregnancy! I was so psyched I treated myself to a trip to Target!

At my last appointment I felt the need to confide in Dr. Smith that I was skeptical that I would even make it this far. I told her that from here on out, I would think positively (my New Year resolution). I wanted to change my perspective and put out there what I hope the Universe would help me achieve… a healthy, happy pregnancy. Now instead of viewing my body as broken, I’m seeing it as something truly amazing. It has gotten me through the toughest times. It is changing to create life and I’m in awe everyday, so I’m going to sit back and watch my body do it’s thang! It may not be perfect, but that’s OK because perfect is boring anyway!

I guess the reason for writing this story is just that, this is a new chapter in my story with Spina Bifida that I thought someone else might be able to relate. This scary time in my life has felt a little lonely as I have had no one to relate to, but thankfully I have the best support system in the whole-wide world. I hope this helps someone else going through a similar story. Maybe you have Spina Bifida and are wondering how a pregnancy might go and how you can prepare. Maybe you have lost a baby in the past and wish you could have someone to talk to about the struggle of trying again. If so, I’m your girl! Since starting this blog if I have learned one thing; only you can write your story in an empowering way, your story will heal you and your story will heal somebody else.

Q: What is your SB warrior’s name?

A: Bella

Q:Where do you live?

A: Scotland

Q: What type of SB does she have?

A: Spina Bifida, Hydrocephalus and chiari II malformation

Q: How can we continue to follow your story?

A: On my YouTube channel: Bellaroo and mummy

Firstly I’d like to introduce myself. My name is Abby, I am married to Martin and we have 3 children. Findlay is 8, Oscar is 5 and our little girl Bella who is nearly 2. We live in Scotland and enjoy the outdoors, traveling, family time and exploring.

Expecting a baby with Spina bifida and Hydrocephalus can be very worrying especially if you know nothing about it. To have support from other mums who have experienced it is such a comfort which is why I got into vlogging.

A year after Bella was born, I started a youtube channel called ‘Bellaroo and Mummy’. 

The reason for this was Bella was born with Spina bifida, Hydrocephalus and Chiari 2 malformation.

When we found out neither my husband nor I knew anything about the disability or knew anyone with it. 

My initial diagnosis was at my 20 week scan. I remember it was a beautiful sunny day, I had just picked the boys up from school and nursery and headed straight to the surgery, my stomach churning with anticipation and excitement. 

We were taken through to see the sonographer and she began the scan.

We were having a lovely chat about the boys becoming big brothers and whether they wanted a brother or a sister when suddenly the sonographer went quiet, too quiet! I could feel the fear coming over me and I began to feel extremely nervous. It doesn’t help that, like my mother, I worry….ALOT so this quietness wasn’t helping.

After what felt like a lifetime, the sonographer said she was concerned about baby’s head. I could feel my eyes starting to fill up. Trying very hard to keep it together in front of the boys, I asked “In what way?”

She told me that baby’s head was the shape of a lemon which is an initial sign of Spina bifida. My heart sank and a few tears fell. I didn’t understand what that meant, was my baby was broken? What impact would that have on our baby or us? What is Spina bifida?

We were then asked to step outside while the sonographer phoned the hospital to make an appointment at the maternity hospital as soon as possible. It didn’t help that this was Friday afternoon and I couldn’t get an appointment till 9am on Monday morning. 

That weekend was the longest weekend of my life. I also had to try and explain this to my husband. The sonographer gave me a few scan pictures one of which was of baby’s head. All weekend I kept looking at that scan picture trying to understand what was going on. 

Eventually Monday morning arrived. My husband and I dropped the boys off at school and headed to the hospital. Again we had to wait to be seen, I hate waiting anyway but when you have so many fears and so many questions circling around in your head, the waiting was torture! Finally the consultant took us through, again she was very quiet whilst doing the scan and then confirmed what the sonographer had initially told us. That baby had Spina bifida and Hydrocephalus (Excess fluid on the brain).

We were taken through to a very small room to have a chat with the consultant who explained a little about Spina bifida and also a paediatric doctor who explained a little of what may happen through pregnancy and birth.

We were also given an appointment to be introduced to the paediatric Spina bifida consultant who Bella still continues to see on a regular basis. When we met with Bella’s consultant we were immediately put at ease. It was so comforting talking to someone who knew exactly what I was going through and could answer all our questions. 

He then introduced us to Sophie from ‘Spina bifida and Hydrocephalus Scotland’ who came out to our house a few times to have a chat and answer any questions we had. We found this so rewarding and to have someone so knowledgeable on hand was such a comfort. Sophie told us about a monthly group which we could attend to meet other families with Spina bifida children and who are there to help and support each family throughout their Spina bifida journey. She also told us about a ‘shunt’ (a mechanical device used to manage Hydrocephalus) and showed us both what it looks like.

I was then scanned at the hospital every 2 to 3 weeks. We was told that we were expecting a girl and after lots of name searching we decided on Bella. 

Bella had a ‘lesion’ in the base of her back which could be open or closed but unfortunately it was difficult to see on the scans. If the ‘lesion’ was open, then there would be obvious nerve damage possibly to her bladder, bowels and legs which could result in her never being able to walk. 

At every scan the consultant would look closely to see if she could tell but every time I would be told ‘We’ll just have to wait and see” this again was torture. 

At 26 weeks I was given an MRI scan to see if that would show if Bella’s back was open or closed but unfortunately she wouldn’t stay still and so could not get clear results.

We then discussed that Bella would be born at 38 weeks by C section because the Hydrocephalus was increasing the size of her head.

At my 37 week scan my consultant advised I be admitted into hospital, a week before Bella was born. I had really got myself quite worked up and was very worried not only about my baby but the whole experience and the C section itself. The stress was really starting to take it’s toll.

My pregnancies with the boys were fairly straight forward and both were water births. 

I found the birthing pool so relaxing and soothing and really felt that it helped me be more in tune with my labour but for Bella I would need to have a C section.

The consultant explained the procedure and explained that there would be alot of paediatric doctors and nurses and also neonatal specialists present at the birth to assist with Bella if needed. 

On Tuesday the 12th April 2016 I was prepped for surgery. There were so many doctors, specialists and nurses there which my consultant warned me about but I think that alone made me very emotional. 

All those people were there to help care for our baby when all I wanted was to hold her and care for her myself. Martin was in his green scrubs by my side and had been my rock throughout this journey. I had so many emotions going through my head but desperately wanted to meet our little girl. Then at 9.25am beautiful Bella was born weighing 8lbs 4.5oz and she was absolutely perfect.

I got a quick look at her and daddy got a quick cuddle before she was taken away and checked over by the paediatric doctors. 

The lesion in her back was open so a dressing had been put on and Bella would need to have surgery the next day to close it and also surgery in 7 days to fit her shunt. 

After surgery the consultant explained that the nerves to her bladder and bowels had been damaged and that everytime I changed her nappy, Bella would need to be catheterised, also the nerves to her feet had been damaged and that she has no feeling from her ankles down. This immediately worried me that Bella would never walk, once again we were told “We’ll just have to wait and see” but she has already began physiotherapy and uses a standing frame and walker to help build the strength in her legs and is doing great.

Bella then spent 2 weeks in NICU (Neonatal intesive care unit) after her back was closed and 1 week in the Children’s hospital after her shunt was fitted before we were eventually able to take her home. 

I cannot thank the staff at the maternity and Children’s hospital enough for taking such good care of our precious little girl. They really were amazing. 

2 years on and we still have regular hospital visits and appointments but Bella is doing so well and is such a strong, beautiful, happy, smiley, little fighter who loves her cuddles and who is so very loved and absolutely doted on by her 2 big brothers. 

I truly believe that hearing someone else’s journey through difficult times can help others feel like they are not alone. I think what Bella’s mom has shared will help others feel like they aren’t the only ones and that they too will come out of this smiling and happy.  This is why we share our stories…I just love this journey we are all on together!

Q: What is your name?

A: Jessica Mobley

Q: How old are you?

A: 32 years old

Q: What type of SB do you have?

A: Myelomeningocele

Q: How can we continue to follow your story?

A: On facebook @JessicaBreathofFreshAir

In 1986, a single Mom-to-be, 7 months along, hearing the news, “Your baby has fluid on the brain. It could be Spina Bifida with Hydrocephalus but, we won’t know until after the baby is born.” I’m sure fear and disbelief began to set in. Yet, there was the voice of the Lord declaring that everything was going to be alright!

I was born on Tuesday, September 23rd. 6lbs 12oz kicking and screaming. They whisked me away to evaluate me while they finished up my Mom’s cesarean. Eventually, they brought me in so that she could see me while I was waiting to be transported to a larger hospital with more capabilities to care for me.

A few days after my birth, my Mom was released from the hospital and came to where I was and where the rest of my family had been with me. The Doctor had already said it was Spina Bifida and Scoliosis and closed the opening in my spine at this point. At 9 days old and on my Mom’s 24th birthday, I had brain surgery to place a shunt in order to drain the fluid from off my brain. At 2 weeks old, I was released from the hospital with a pretty good prognosis.

The days and nights for my Mom and Grandparents were spent caring for my needs, but most of all loving me! As a baby, my Mom dedicated me to the Lord knowing that my future was in His hands!

The next few years was a wait and see kind of thing to see how my mobility and brain would develop. Thank the Lord, I was hitting all the milestones as expected! I practically lived off of Spaghetti-O’s for a few years due to Chairi Malformation which made it difficult for me to swallow (eating became much easier as I got older.) At the age of 4, I began walking with the assistance of a walker and leg braces and I believe even a back brace at this point. I started Pre-K a year early to get me acclomated but then after that, I was right on track with the rest of the kids my age. I started doing physical therapy regularly at school and at home. My Papa built me what we called an obstacle course. It was a platform with stairs on each end and railing on the sides. I walked it every.single.day. Papa was determined that I was going to beat the odds and walk on my own. When I was 6 years old, that dream came true and I threw down my walker at school and started walking on my own. A miracle took place on that day!

School was a little challenging especially in the subject of Math which is common with Spina Bifida. We tackled my daily medical needs, education, and thank the Lord, not too frequent surgeries or infections head on. I took ballet and tap which really helped with my balance and was involved in church activities. I never really got bullied too much. I guess that’s the benefit of being raised in a small town where everyone knows who you are. As I got a little older, making friends and dating became harder as I became more aware of my differences. I chose not to be a part of a Spina Bifida community growing up because for one, there wasn’t one nearby and two, I really just wanted to be like everyone else.

As I reached my teenage years, the Scoliosis combined with the Spina Bifida became more of an issue. I was always shortest in my class. In the 5th grade, I eventually needed surgery to correct a portion of the C-curve of my spine. The surgery went perfectly and my surgeon was amazed with how quickly and well I healed. All glory to God! The same goes for the second spinal fusion that I had a year or so later to straighten the top portion of my spine. My surgeon told us that the lower half of my spine should follow along and straighten itself out without surgery – That was the hope at least because the lower you go, the more risk of complications. Well, it didn’t so into surgery I went in the Summer before 11th grade. That recovery was painful and longer than the rest. I would say about a month later, we noticed a large hard bump on my back. We were obviously concerned so I went in to get it looked at. One of the screws had come lose and was protruding, so scared and angry I went back into surgery.

While forced to remove the bottom rod, my surgeon also removed the original rod that was at the middle of my spine, thinking that I didn’t need it any longer. A day or so after surgery, the nurse helped me get out of bed to sit in the chair and possibly go for a walk. As soon as I sat up I could tell something was different and so could my parents. I was slumped over. I tried to stand but couldn’t. My legs were like noodles and gave away. I was scared and frustrated because this was not normally how my recoveries go. (I’m an over-achiever and like to beat the odds.) The next day, the same thing, I still couldn’t stand and the next day and the next. After several days, I was discharged from the hospital and started going to physical therapy and I wore a back brace again – which I hated because none of my clothes fit properly and it was so uncomfortable. I was eventually able to walk using a walker for about 3 months (the ones that you put tennis balls on the bottom of them to help it glide better. So stylish. Haha) before walking on my own again. By this time I was 18 and could no longer see that surgeon.

The following year, I began experiencing severe pain in my back and legs and my balance was getting worse. After testing and going to a pain management Doctor but getting little relief, I was referred to an adult orthopedic surgeon in St. Louis, Missouri. He said he could fuse my entire spine by placing one rod that would run from the top of my spine all the way to the bottom. I asked if it would improve my mobility and his response was “no.” We scheduled surgery and returned back home to Florida.

During this time the Lord had really been dealing with my heart and drawing me closer in my commitment to Him. My Dad had recently left and filed for divorce – a major devastation that completely turned my life around. I was committed to prayer and tapped into the gift of intercession. As I prayed more and more, I began to feel uneasy about the surgery. It was weird because as crazy as it sounds, I was actually looking forward to the surgery relieving me from the pain that I had been having. On Tuesday nights, Mom and I went to intercessory prayer at our church. While praying there one evening, I heard the Lord say, “I created you. I do not make mistakes. Your life is a testimony. I have come to give you wholeness and healing.” I began to pray on it and ask the Lord for healing. The Lord confirmed that word to me in a dream and I felt led to cancel the surgery, take a leap of faith, and wholeheartedly Trust God to do what He said that He was going to do. So, I did.

As time went on, there would be extended periods of time when I didn’t have any pain at all. I knew God was working. I’ve also had times of pain and deep discouragement. Around the age of 24, I began to lose all my balance and most of the strength in my legs over time and slowly worked into needing to use a wheelchair full-time. I felt defeated. I let pride get the best of me because I never thought I would be the one in the wheelchair. I was always going to be independent. But, I had to come to the realization (with the Lords help) that the wheelchair or having Spina Bifida is not a curse, but a blessing and that God’s promise still stands! The Lord helped me look at that chair from a different perspective. I now see myself as free to go where I want without getting exhausted and being in an extreme amount of pain. If it wasn’t for it, I wouldn’t be able to do some of the things I’ve done and see the world! Is it still frustrating at times? Sure. But it doesn’t define me! Neither does it confine me!

Years later, I began to feel unsettled where I was at. I wanted something more. I wanted opportunities to make a difference in this world. Especially to the people that were going through medical issues, like myself. When the Lord told us to move to North Carolina, I knew this was the place with opportunities and for God’s promise to be fulfilled! God has not disappointed! Now in my 30s, for the first time, I’ve connected with other people that have Spina Bifida, I have an amazing boyfriend who is an answer to prayer and everything I need that I didn’t even know I needed – As we can relate to each other with us both having Spina Bifida. I have a wonderful group of friends that I met from Camp Carefree – a camp for people with disabilities. What wonderful gifts that I have been given in love and friendship! I’ve advocated for myself and others with the Spina Bifida Association. Last but not least, I’ve been strengthened in my walk with the Lord. My eyes have been opened to wisdom, knowledge, and understanding to Spiritual things. I have made myself available to the Lord to use me in my current condition. God has remained faithful!

Jessica has been through so much in her life and has never let that get her down.  Her faith seems to keep her pushing through as well as the love and support from her family and friends.  We all need to be surrounded by people who lift us up in order to make it through the tough times.  It’s a great support system like this that can get you through anything!

Q:What’s your name?

A: Jessica Hyder

Q: What type of SB do you have?

A: Myelomeningocele L4-5

Where do you live?

A: Michigan

Q:How can we continue to follow your story?

A: On Facebook @Jessica Hyder

I was my parents firstborn child, after a handful of losses. In 1985, my parents were lucky to find out before my birth that I had spina bifida… But, I arrived fairly soon after that diagnosis. My parents were told not to expect much from me. I wouldn’t walk, would likely require a shunt and I wouldn’t attend school with my peers because of learning disabilities.
They were encouraged to abort, although my mom was nearing the end of pregnancy.
My family always encouraged me to do everything children my age were doing…And I did everything that my prognosis said I would never do. I began walking at age 4 with HKAFOs, and followed by AFO’s as I grew. I never did require that shunt. I went to school with my peers, graduated high school and attended college. I worked as a preschool teacher for nearly 10 years, and absolutely loved it.

There are definitely struggles with spina bifida, but I can’t say that my life hasn’t been worth living because of spina bifida. I have a family of my own now and love every minute that I get to see my children learn and grow. I enjoy nature and photography and seeing the beautiful world around me.

Jessica is living proof that you can live happy life with Spina Bifida!  There is hope of having a great education, career, and family someday.  So, regardless of what doctors tell you make sure you decide what is right for your family and know that no matter what it will be OK!  Thanks again for sharing Jessica!