This post is part of an on-going series of posts by Julie Hemker and her mother Charlotte Schild sharing what it is like to live with Sacral Agenesis.   Links to the other posts can be found at the end of this article.  Pat

by Julie Hemker

“Every day is a winding road…” – Sheryl Crowe

Julie Hemker (smiling as always)

Sheryl Crow’s lyric accurately describes my life. Being born with Sacral Agenesis, a rare congenital spinal birth defect sounds convoluted indeed.  Indeed, it has been.  Now at 37, I face different challenges than I did during childhood.

My parents said I had a “mission” to do something.  They knew not what, just that I was unstoppable.  I plowed right through all medical challenges, not without suffering, but always with a smile!  That has not changed about me at all.  Now, the struggles impact me differently.

Let’s face it, being a child you have no cares–no mortgages, car payments, or other responsibilities.  Life for me was surgery upon surgery and and recovery so I could get back to school (which I LOVED) and my friends.  My parents had all the responsibilities, bills, mortgages, car payments, raising 3 children, one with Sacral Agenesis.  They made it look effortless–some parents have a way.

Now, as an adult, recovering from surgeries or in my current situation a spontaneous Cerebral Spinal Fluid Leak comes fully loaded with adult responsibilities to fulfill while also maintaining my free spirit that keeps me going.  Now that seems to be ironic.  Still I do it.  It keeps me balanced.

This CSF leak started at the beginning of the year.  It is at the base of my spine, at approximately L4, with a pseudomeningocele which is easily palpated.  This is actually good news because it gives an idea of where the leak is along the spinal column.

Mark Hemker

In 2010, I had 2 spontaneous CSF leaks – one at the base again and another at the neck after a case of pneumonia.  This took me to the Cleveland Clinic for myelograms and several blood patches which closed the leak.  I think of it like fixing a leak for cars when they have flats.  This analogy makes me smile and that is important.  I’m smiling now thinking about it!  But I do think it is too bad medicine hasn’t developed a pill that goes straight to the dural sac, isolates the hole, and plugs it. It would be so much easier.  But, if this were possible it would mean that we wouldn’t be protected by the blood brain barrier – so important to prevent meningitis.

Now, today, this very moment my confidence has been knocked down as last week I fell in my house.  Oops.  Talk about an ego killer.  Also my leak got marginally larger with onset of increased nausea, tinnitus, stiff neck and eye pain.  I cherish every percentage of recovery.  To think I lost my balance, makes me feel foolish.  However, with CSF leaks it’s common to have difficulty balancing and difficulty focusing the eyes which made it hard for me to judge where I was sitting on the sofa – so I hit the ground instead.  I’m already making progress from the fall and the collection of fluid is getting smaller.

Stella The Nose Hemker

Even some of the increased symptoms have begun to subside like the nausea.

So, as I lay here I must remain focused on the positives of which there are so many.  I’m so grateful for my husband who loves me day in and day out, even when I’m agitated from pain.  My family still takes care of me in all ways.  When I roll over to see the nose of my lab Stella I can’t help but smile.

A day in the life with Sacral Agenesis — particularly today —  is challenging, but I’m so glad for the rest of Sheryl Crowe’s song, “…I get a little bit closer to feeling fine.”  Yea, life is a musical and even though my road is winding I know that I’m going to be alright –  I’m still on a mission…to be happy each day because I have so much and I don’t mean a medical diagnosis.


Here a are the links to the other posts in this series, listed in the order in which they were published:

Julie Hemker
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. Hi, I have have had sacral a genisis since I was born, I am now 40 and as a result have a number of conditions because of it. Bowel, bladder and kidney failure (currently waiting on a dual transplant list). I still am able to work full time although have been told to take it easy! (NOT in my nature!).

    • Hi Martin,
      So fantastic to meet you and close to my age! Are you in the States? So you are fiesty too? SA impacts us all so differently…so wish it wasn’t your kidneys!! I’ve been lucky with my kidneys but understand the other, if you know what I mean. So I’d like to email. I will let the host of the blog know and she will send you my email! Taking it “easy” is such a crazy idea, I agree! If we were “take it easy” types we wouldn’t have made it through :) I look forward to getting in touch!

      • Hi Julie

        apologies, but for some reason I had lost the link to this page, and have just found it again looking for something else! I am actually in Scotland. It would be good to take you up on your offer of emailing. Are you on facebook? regards, Martin

  2. Just wanted to drop a note here, very thankful to have read your blog. I am 30, was not diagnosed with “spina bifida” (now known to be sacral agenesis with an anterior myelomeningocele) until I was 4 and have suffered endless problems because of it. I am now struggling with SSD denying me disability even though my back looks like a DNA helix. :P It’s nice to know there are other people out there like me, living their lives and trying to take it with a bit of humor (though I naturally do hope you are doing better by now).

    I also liked your thread about having a pediatric problem in an adult world. This is something I have been complaining about for years. I am constantly arguing with doctors over getting treatment, or explaining my defect — and its systemic effect — to someone who could have read my file before I came in. Hopefully one day there will be a change.

    • Hi Elizabeth,

      Oh how refreshing to hear from you! It is nice to know we are not alone isn’t it?! I’m amazed at the handful of people who seem to have SA or Spina and am glad there is a community to relate to or know we have others. Please feel free to email me at!! I would love to talk about the serious issues facing us adults who needed the knowledge and experience of pediatric docs. I bet we all have said it over and over as well but I’m glad to talk with someone who understands and maybe we can join forces :) I love your sense of humor and where would we be without it eh?! I hope to hear from you soon.
      I apologize for my delay. I was recovering from the surgeries and am naturally doing better! YES!!! You understand the struggles we take in stride. Talk soon!


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