by Jahna Berry
Hi, my name is Jahna, and I was born with sacral agenesis/caudal regression syndrome (SA/CRS) and spina bifida in January of 1975.
Welcome to my story! I hope you get to know a bit about me through it, and please, if you have any questions, ask me! I’m open and more than happy to answer anything. Just email me at firstname.lastname@example.org.
First let me welcome you to iSACRA! It has been a deep-seated dream of mine to create an organization like iSACRA since I was 13 years old and really began to wonder where all the others” like me” were in the world. Before then I was more than content with just being Jahna, but I think the onset of puberty and recognizing my “differentness” made me want to seek out others like me.
I did recognize that I was different when I was about 2 years old, according to my mom. She said I scooted my little butt into the kitchen and asked her why my legs didn’t work like other peoples’ legs. And she said that she just told me that God makes everyone different. She said, “Some people have problems you can see on the outside like your legs being different and like Mommy wearing glasses, and some people have problems on the inside that you can’t see.” She laughed then and said, “That was good enough for you because you said ‘OK!’ and just went back to your room to play.”
I was fortunate that my parents had enrolled me in a junior wheelchair sports camp for a week every summer here in Michigan when I was 9 and so I was able to participate in many sports each summer with other disabled kids, but none of them had SA like me, and only one was a double leg amputee. So my search continued!
When I was about 16 years old, I was given my first computer, and one of the first things I did was start looking on the internet for information about SA/CRS and other people who were born with it. Unfortunately, there was very little information, and what there was wasn’t very understandable because it was mostly medical journals. It wasn’t until I was in my late 20s that I actually met, face to face, someone “like me.” That was a life-altering experience, one that I will forever treasure.
Since I was 17, I’ve talked to probably hundreds of parents and young adults with SA/CRS online and on the phone. In 1998, I started the first YAHOO! Group for SA/CRS, and from there we’ve just grown! You are not alone!
While no two cases of SA/CRS are identical, one of the things you will find here is a huge support system, a whole family you never knew you had. There will be answers and advice based on life experiences from those with SA/CRS and the parents of young children born with SA as well as tons of support and love.
I was born to a NON-diabetic mother. By all accounts, she had the “perfect pregnancy.” I was born 8 days past my due date weighing just over 4 lb. Shortly after birth, I was diagnosed with SA/CRS at L1 as well as an imperforate anus. My legs were crossed permanently in a Buddha/yoga position, and my lower legs consisted mostly of bone and fat. It was also determined that I had extremely poor circulation in my legs but especially my lower legs. (Although I am told that through some neurological miracle, my feet had complete sensation and were extremely ticklish! I could feel touch and hot and cold as well as pain in both legs.) My feet were so small that at the age of 4, I was still wearing size 2 crib/infant shoes. I should also mention that outside of a few numb spots due to surgeries, I have complete sensation throughout my whole body.
Because of the imperforate anus, I was given a permanent colostomy when I was 11 weeks old and thus began my surgical journey.
As I got older and more mobile, it became clear to my parents that my legs were nothing but dead weight that I was forced to drag around. It was also becoming clear that this was also a health hazard because every time I got a scrape or any kind of wound, it took so much longer to heal because of the lack of proper circulation. My parents also realized that it was a total pain for them to dress me, and when I started to try to dress myself, it was almost impossible for me to put on pants. This became a major concern for them, and they began to think of my future as an adult.
When I was 4 1/2 my parents found a doctor at Shriners Hospital in Chicago who would disarticulate (amputation through a joint without cutting bone) my legs at the knees. Another doctor they had consulted wanted to amputate at my hips. He was a supposed “expert” at the time in SA/CRS, and he told my mother that she was a “bad mother who didn’t deserve to have children” because she refused to have my legs amputated at the hips, which was HIS preferred “treatment.” But my parents persisted in finding the doctors who would do what they felt would be the right thing for me. While at Shriners, I was also diagnosed with spina bifida at C6 and C7 and Klippel-Feil syndrome in the same area.
I’m now 40, and to this day I thank my parents for making the decision for me to have my legs disarticulated. I don’t remember life with legs, and by all accounts I bounced back within days of the surgery, and I never had a problem with the “missing legs.” Within weeks it became apparent to my parents that disarticulation was the right answer for me. I began using my legs in a reciprocal motion (like walking), and shortly after I was fitted for prosthetics, which never really worked out for me, so I choose to use a wheelchair full time. For me, walking is overrated.
When I was 2 or 3 years old, it became clear that I could not be potty trained because I was also born without a urinary sphincter. When I was 5 or 6, they started me on a journey to create one, after which I would be able to catheterize vaginally. The surgeries (seven of them) ultimately did not work out, but there was a bigger and greater door in my future.
When I was 10 years old, my parents were told of a new procedure to enlarge my bladder and create a “continent urinary pouch.” It’s called the Koch pouch. I had the surgery just days after my 11th birthday, and I was given a small stoma (similar to a colostomy) that led to my bladder. Inside is a valve that allows a ‘catheter to be inserted when I feel the urge to urinate, but it blocks urine from leaking out. Medical technology and knowledge have come very far since 1986, and they now have better and more up-to-date procedures for kids like me. Not that I’m complaining. My “LilBit” (the name I gave my urinary stoma) was, and still is, a godsend. I had been either attached to an indwelling catheter (which was uncomfortable or unreliable) or in diapers my whole life. There was nothing (for me) as degrading as being in fifth grade wearing diapers and being teased for it. The Koch pouch got me out of all that and dry! Free! Independent! I thank them for that decision also.
So, I’d had 10 surgeries by the time I was 11 years old. Not as many as some but still a lot. But I bounced back quickly from each one. I was very lucky in not having to deal with a lot of post op issues. Once the IV was, out I was a happy kid!
So who was I without surgery?
By all accounts, I was a happy baby and child. I always smiled and aimed to please. I loved being around people and other children—still do!
I started preschool when I was 3. It was the only class I was ever in that was all disabled children. From kindergarten on, I was mainstreamed, and I graduated in 1993 with the rest of my peers. From there I went to a private university, where I majored in American Sign Language and deaf studies with a minor in psychology. I’ve since changed my major to medical administration when it became clear that ASL and carpal tunnel weren’t real good companions.
As a teen, I hung out with friends and I got my driver’s license when I was 16. That was total freedom and a form of independence I didn’t know existed. I suddenly became a total social butterfly.
One other thing I’ll thank my parents for is for never holding me back in anything. I was expected to perform chores at home just like my brother, and I was expected to bring home good grades. I was allowed to try just about anything (unless it was obviously harmful!), and I was just given wings to find my way. I was also not allowed to say “can’t.” I had to prove I couldn’t do something before it was done for me. There was no coddling.
I married at 21 (a mistake) and have been in three other major relationships since. All long term. Nothing is impossible.
The best advice I can give the parents reading this is the following:
Listen to the doctors and hear what they have to say but also take into consideration that YOU know your child much better than THEY do. Most doctors have only read about SA/CRS in medical school, and they’ve probably never actually seen a case. There are a few doctors and hospitals that have seen more cases than most, but in general, you’re going to run into doctors who really have no clue. All they have is old data. YOU know your child. YOU spend day after day with them. If something feels off or if a diagnosis or a procedure feels or sounds wrong, get a second opinion or even a third. It’s your right. I cannot stress that enough. IT IS YOUR RIGHT! You have to be your child’s advocate in everything. Doctors work for you, not the other way around, as much as they may like to think otherwise. I know it can be intimidating; it is to me, and I’m 40 and know the system! All the medical speak can be scary, but you can do it. Especially in the early years, you are the only advocate your child has. We here at are also here for you. Come to us and ask us questions, and someone here will have advice or an idea of where to go to get the answers you are seeking.
Don’t pass off major decisions about your child’s healthcare until they are older because you are afraid they might be angry at you for a surgery or a procedure you decided they needed. I’m now 40, and I can honestly say that I do not, for one second, regret any of the decisions my parents made for me. Children bounce back a LOT faster than teens or adults. They also adjust to body changes (ostomies, amputations, etc.) quicker because it’s all they’ve ever known. To this day, I think the reason I do not have “phantom limb syndrome” is because I was 4 when my legs were disarticulated. My brain rewired itself because it was so young and moldable, and I don’t have that sense of something missing. I also don’t know life without ostomies. Because of that, it’s been easier for me to adjust and live my life without regret or depression. Can I say that this is without a doubt the right answer for every person out there? No, but it is my opinion and experience and the conclusion I’ve come to after talking to people of all ages (including parents of young children).
Do not coddle your child, in the end you are only handicapping them more. Expect them and encourage them to be as independent as they possibly can. You won’t be around forever to care for them.
I once knew a man in his 40s with moderate spina bifida who still lived at home. He had never gone to college, never learned to drive, never had a job, had never cooked a meal or cleaned anything, and his mother, who was in her 70s, still bathed and dressed him because he “couldn’t,” Physically speaking, I am more disabled than he was. Independence-wise, he was much more disabled than I am.
Your child is going to take every cue from you. If you treat them like a baby and coddle them, that is what they will come to expect. If you freak out and get upset every time someone stares at them, they will, too. Most of the time I don’t notice when people are staring at me. Why? Because my parents never ever made a big deal out of it. They ignored it. If a child or even an adult would ask, “Why does she look like that?” or “What happened to her?” they would explain I was just “born that way.”
I know I’ve jumped around and probably left out a lot. I am always available to answer questions. No question is too simple or too personal. It’s what I’m here for. Please feel free to email me anytime for anything at email@example.com.
Thanks for reading!