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!
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!
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!
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!
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.