Road Trip (My Life with Sacral Agenesis)


We are delighted to introduce to you, dear readers, to Julie Hemker and her Mom, Charlotte. These are amazing women with an amazing story to tell.  Julie was born with Sacral Agenesis 37 years ago.  She has had over 40 major surgeries, her first at age 1.  But as Julie points out, she is not defined by Sacral Agenesis–her life is so much more than being a patient.   Julie and Charlotte will be telling their story in a series of posts, starting with Road Trip.  Enjoy!  Pat

By Julie Hemker

Julie and her mom, Charlotte

Life is much like driving a car, when you look in the rear view mirror, you see the experiences which have brought you to today.  Today?  Today is a great day!  It is a gift given to live however you would like.  It seems that being born with a congenital spinal birth defect, Sacral Agenesis, 37 years ago, maybe my life would be more determined and dictated by medical protocols and trauma.  Well…I like to mix it up a bit. We’ll start with now, today!

Today, I am a successful Management Consultant who works remotely, happily married for 12 years, have a very spoiled and adorable yellow lab Stella, have THE best family ever, wonderful friends, a B.A. from Denison in Psychology, Biology emphasis, home owner, and over all, the happiest person.

Why?  Because I choose to be happy every day.  I have had over 40 major surgeries starting with 0rthopedic surgeries at age 1 to correct bilateral club feet to a pelvic stabilization in 2009. My urological procedures began at age 7 with, at the time new ground breaking treatments including the artificial urinary sphincter and bladder augmentation.  Then, I had a multitude of spinal surgeries including laminectomy decompressions, tethered cord releases, about 7 spinal punctures including blood patches at T11-T12 and 2 at the lumbar level.

Currently I have a cerebral spinal fluid leak and have been on complete bed rest for 3 months, showing slow progress.  Conservative treatment, bed rest, is preferred.  Surgical intervention or further blood patches are too risky with the amount of times my dural sac has been opened.

So, why am I so happy?  I love life.  I have been this way since day one, really.  I have to endure the medical pain but have learned self-hypnosis and biofeedback for pain control and I like to look at what is wonderful in my life, not catalog it as if in a medical journal because let’s face it, it already is.

What I have accomplished may seem ordinary to others, but for me they are extraordinary.  Obtaining my degree from a very fine educational institution was of the upmost importance to me. On graduation day I walked across that stage to receive my diploma, with pride!

Julie and Mark

I’ve been the luckiest, though, in love.  I never thought I would be able to let down my guard and share ALL the medical “stuff” with anyone, ever.  I blocked love out until Mark, my now husband, saw right through me.  He was persistent and we became friends first which blossomed into more.  With Mark I feel safe.  We’ve been through at least 14 surgeries since our marriage in 2000 yet we grow closer and our relationship stronger.  I’m so blessed.  He is the most darling, intelligent, funny, kind, honest, forthright, sensitive, gentle caring and patient person I have ever known.  He chose me.  Wow!  I still feel giddy because I treasure every day we have together.

Most young couples don’t expect to enter their relationship having to confront and honor the part of the vows, “…in sickness and in health.”  We are and continue to.  It is all in communication, honesty, acceptance and love.

Lying here flat on my back with my spinal leak I feel like the luckiest woman in the world.  I hear sounds of our dog Stella and Mark snoring in stereo!  That’s why they made ear plugs.

I have many medical traumas ahead but what I have is NOW.  I love NOW, right now.  It’s bliss.  “They” say it takes a village to raise a child well my village is full of brilliant surgeons and loving people to get me through what lies ahead.  If I live in the future or dwell on the past life could get pretty over whelming.  I am not Sacral Agenesis.  I am a 37 year old woman, happy with the life I’ve been blessed to live.  I wasn’t supposed to live but someone had other plans for me and here I am living them.

Yes, there is a story behind every person and it starts with my Mom.  She will be bringing us up to today, the present.  Before there was me, there were my parents and they have a wonderful story to tell.  Stay tuned to hear all sides of Julie, this woman with Sacral Agenesis who laughs the loudest, smiles the most and adores everyone in her life.  Let’s take a journey together.  Join my Mom and me, as we share our unique experiences, with Sacral Agenesis, from different perspectives. You will learn how it impacted our family, our relationship and our experiences with healthcare from 1974 to present day.

Keep your seat belt on and choose your favorite CDs.  We have open road ahead, let us see what is in this rear view mirror!



Other TDWI posts on Julie’s Journey:

Part II: The Beginning

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Julie Hemker was born with Sacral Agenesis 40 years ago. She has had over 40 major surgeries, her first at age 1. Julie likes to point out, she is not defined by Sacral Agenesis–her life is so much more than being a patient. Julie is the author of our most enduring series on TDWI, "Living with Sacral Agenesis."


  1. I know Julie from our Denison University and Alpha Chi Omega sorority days … And this is her and who she is – truly the most fun-loving, caring and funny girls I’ve ever known. Today I’m sad that we don’t live closer but ironically – through her blog posts I’m learning about her medical issues – because she rarely talked about it … Always too busy making the best of life and having fun. I love you Julie!

    • Dear Beth,
      Wow! I am so touched you wrote. Denison days did define us a lot and you are certainly in many of my best memories. I admire you so much and love your optimism. Funny how after all these years you all learn why I was gone so much :) It takes maturity to share it with anyone and this is such a great forum. Read my Mom’s posts, Charlotte Schild to get her perspective on our little life journey. BTW, I did always have fun! I love you too and really wish you lived closer.

  2. Julie is our Global Happy Heartbeats Ambassador. I have never met a happier person that shines the day for everyone. She lives Happiness.
    With her we have gathered over 75,000,000 Happy Heartbeats of Gratitude at Give The World Your Heart .
    As I talk to her daily, I humbly leave all my trivial complaints behind. When I hear people complaining I simply tell them about Julie. They stop.
    You will love Julie’s Blog because it is real and is above all, Julie’s Remarkable Story

    • Paul,
      My partner in the Happy HeartBeats :) Your words and those of Sandy Masin always humble me. Because of Happy HeartBeats, you’ve allowed me and my family an outlet for this story, although, ordinary to us, impacts others in a different way. We are going to change the thinking in our world to more positive and it’s through Happy HeartBeats and sharing with others that compassion is achieved. Paul I love working with you and am honored that you always know what to say to me and direct me in the right places. You are amazing!

  3. I would like to echo the thoughts those others who left comments. Having know Julie and her family for 26 years (Wow, I am old!) you would never have known that Julie’s medical issues were so severe. Julie and her family exude laughter and love! What a wonderful role model, spokesperson and all around amazing person!

    • Dear Robin,
      Wow, are we really that old? I thought I was sooo much younger? Good thing we are ALL young at heart! You are so sweet. Okay, now I sound old, but growing up with you in my life, enrichened it!! You always made me feel so loved and giving me ice cream was a huge bonus. Your laughter filled our house Robin :) Thank you for writing such nice words! No pressure eh? I hope to see you but if it’s in the mall, maybe we shouldn’t scream like there’s some kind of trauma – but wow, we ran into each other, how fun! I really love you Robin.

    • Dear Kathryn,
      Wow, so pleasantly surprised with the support from all of you. Amazing the random, or not so random events in life, that bring us closer. Thanks for your enthusiasm, though not at all surprising and interest. I think we are becoming better friends!! How great. Strange to get to know each other over this but at least you all know me as smiley and fun, which I guess is the point. Despite what we are sharing it’s done in the positive and upbeat way in which I was raised. Happy Day!!

  4. I’ve only recently met Julie in the past year. Oh not in person (yet)….but over long “best girlfriend” conversations by phone, email and texting. Julie still has room to take on “another” friend in to her life. And I’m grateful our paths crossed and I found her. In her boundless optimism, intelligence and screamingly funny wit, I have been touched deeply and healed of some emotional baggage that kept hanging around, things I couldn’t seem to shake. While I’ve always been an optimistic person, it took Julie to remind me about living each day to the fullest and despite your circumstances, choose to be happy and to live a life without regrets. You know right how you stand with Julie, because she TELLS you. Freely, unabashedly and without restraint. Thank God in this frenetic, sometimes disconnected and lonely world, there are people like Julie who make you feel like you are really special and can accomplish and overcome anything. Tell someone how much you love them today. Just do it. Like Julie does. One person at a time, all the time. Thanks Julie. You are a rockstar! Love you much. Renee

    • Dear Renee,
      Okay that officially makes us soul mates! Ditto to you sweet heart. I love our conversations. What’s amazing is that real friendships develop over the phone for work. I adore you and actually teared up when I read this. You amaze me with your writing and so accurately capture our relationship. We do have insanely great, open conversations. Enjoy today!! I love you too, rock star :)

  5. The first time i spoke to Julie was over the phone. We immediatly connect and became rapidly great friends. She is amazing. She is aray of sunshine. After a year, my husband and i finally had the opportunity to meet her in person and spend some time together. I will never forget this moment. We had the best time of our lives. Mark and Julie have an incredible story and they are such a great example of strengh and joy to us. Every time i feel down i think of Julie and my smile comes back quickly. She has changed me and the way i see life. She is a sister for me. What is most incredible to me is her story, her love for life. She has touched so many hearts. You will love her too and her story. It comes from the heart. I love you Julie

    • Dear Nora,
      My sweet Bella! How did I ever get so lucky to become your friend? Your voice brings a smile to my face too! We wish we lived closer. Why are you on the other side of the country? That vacation was so fun, just enjoying conversation, cooking together and laughing…oh the laughing. Mark and I miss you so. Thank you for sharing my story and supporting us in this! Nora, you are my sunshine too! Hugs and kisses to you, hubby and little luv bug! You always know what to say. Love you and miss you soooo much.

  6. I met Julie when my family moved to Indianapolis in the middle of my seventh grade year. At my previous school I was faced with the typical angst and drama of middle school. But at this new school, Julie was the first to reach out to me and we quickly became fast friends. Ironically, because of her, I would say the remaining middle school years were filled with some of my best memories. My only regret is that our family moved to another state the summer after eighth grade.
    Julie taught me how to have fun, laugh, and breath in the deep wonderful air of life. I never forgot her, or the impact she has had on me. She is truly the awesome person you see here and more. I am so happy we are back in touch again.
    Thank you Julie for sharing your story.

    • Dear Melissa,
      Oh you are so dear to my heart! I remember becoming instant friends with you and staying the course! I feel so lucky to reconnect as we have been. We are so connected through your smart phone :) You don’t know what a positive impact you had on my life at that time. Those of us that had our slumber parties and chats on the phone – you ALL treated me like I was “normal” and I felt so incredibly a part of being a kid. Thank YOU for always being wise and for loving me then and now! I’ll be reaching out soon! You are truly the most awesome and brave person I know!

  7. Julie, you and your spirit shine brightly and are contagious. Your strength and positive outlook are to be admired. You and your mom have the same amazing smile!

  8. Hi Julie I just wanted to say how your story inspires me I was also born with sacral agenesis, however; it wasn’t until recently I even knew there was a name for my disability which made it really hard. Well its nice to meet up with someone with the same disability thank you for inspiring me and many others!

  9. Well first off, I was born with sacral agenesis. My mother was ( still is) a diabetic. She was very persistent in telling the doctors that something was wrong with my potty training. They continued to tell her that she was pushing to hard and to basically lay off. She finally got them to look into it further and there it was. My parents, which I still have many issues with, chose to wait to try to correct ir until I was able to make the decision for myself. However, that led to me going through the uncomfortable surrounds in school and general life around me all the time. At the age of about 13 I developed anorexia. My therapists have basically come to the conclusion that I need to control something (other than my bladder and bowel) and chose this path. I am now 31 years old. About seven years ago I took the plunge and underwent a facial slyng procedure as well as an ACE procedure which has now closed up along the years. To me and my family’s total disappointment, it failed ( 1 out of the 30 procedures done). Now years later after trying to hold stable relationship and keep my health at bay, I am faced with the scary thought of another surgery. I really would love to know if anyone has undergone the surgery in which the urethra is blocked off and a stint is put in the stomach for catheterization. I use a catheter now through the urethra. My main focus is to just be out of diapers. I am TOTALLY incontinent of both bladder and bowel. I would just like to know if anyone has had this surgery done and how it has worked out for them. I am looking for all the answers iI can get. If you have actually taken the time to read this, it is much appreciated.