Julie Hemker sacral agenesis

This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. After taking a break from the site, Julie has returned to share her latest experiences – two surgeries and the potential to walk again. As she notes, she will soon have the stabilization and freedom that she hasn’t enjoyed since she was 19.  Julie’s tenacity and courage can’t help but inspire and encourage the rest of us. We all have so much to be grateful for. If you would like to read the whole series, please scroll to the bottom where you will find links to the other posts in this series. 


Sigh….I’m back! So much has happened since my last entry. Not only did I turn 38 but I had my 48th surgery! Yes, I’m so grateful to be alive. Being born with sacral agenesis and undergoing many surgeries had made my life full of adventure but also full of risk. I don’t like to admit that I really am a fragile piece of sea glass but this time around I felt frail. I have a unique outlook on aging. We cannot beat it and it’s really a beautiful part of life – growing older. I think every fine line on my face tells a story of laughter – I have many laugh lines and lines on my forehead from scrunching my eyebrows when in pain and more. My face tells the story of some woman in the middle of America sharing my story with you.

There have been many ups and downs in this journey whether we speak of this surgery or my life as a whole. This surgery is amazing. My surgeon placed two titanium rods on each side of the spine (lumbar) and attached them with six screws. He then opened two vertebrae with a “cage” to hold them apart while he used the bone he shaved from my pelvis to graft up there, thus creating a fusion to keep it stabilized as well as alleviate the massive amounts of pressure on my disc. He also removed a heterotopic ossification. This surgery is going to give me stabilization and freedom that I’ve not known since around the time I was 19 so Happy Birthday to me! It was not easy. It was very painful yet the room was filled with hope no matter how many times physical therapy came by to have me get up and walk – I did it and then more. It is essential to move after surgery for so many reasons. Everything went according to plan. We had difficulties because my blood pressure kept dropping too low despite the large amounts of pain. But I made it! Finally, discharge day was here and the day before my Birthday I was home in my bed. My Birthday, September 11th was spent in my bed, in this house with my loved ones. We never celebrated. Coming home and surviving this surgery was gift enough and let’s face it, cake did not sound good. I wasn’t hungry at all!

As the next couple weeks progressed, I did not. There was so much drainage from the surgery site which they expected because I have so much scar tissue from the prior 10 surgeries so it takes a while to bleed. My Mom, an RN did all the dressing changes wonderfully and we did up to four a day with thick dressings. We called as the area became red, painful and puffy. I landed myself back in the hospital about five weeks later having my 49th surgery (not planned). I did have an MRI which showed large amounts of fluid under and around the incision which were causing an influx of all the neurological symptoms. I was treated for a full blown infection with a PICC line and strong antibiotics to cover gram positive and gram negative bacteria. I had a reaction to these strong antibiotics and also a strong reaction to the anesthetic. I became quite ill and actually stayed longer for this second surgery. I did have two drains which kept the site from collecting fluid. Finally I got strong enough to get discharged. I just had my staples out, again, on Friday.

Photo of Stella, faithful yellow lab, companion of Julie Hemker, a young woman living with sacral agenesis
Stella, Julie’s faithful yellow lab

My recovery is under way and I’m making progress. Most of all my hopes are high and it’s so nice to engage with others. I’ve been completely quiet though out this process because of lack of energy and focusing on nutrition and healing. This surgery and the second one will get me to a place that I haven’t known in so long. I have the patience to get there by doing what I’m supposed to do. I long for the day when Mark and I can take a walk with Stella (our lab). It’s finally happening!! I’m so pleased and can’t wait to live a life with Mark that we’ve not known yet. All I know is the words of the Rolling Stones, “Time is on my side yes it is, yes it is…”

Links to the other posts in this series:

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

Oh We’re Not Gonna Take It Anymore…

Raising a Twin with Sacral Agenesis – A New State of Normal

Eureka! A Surgeon is Found – (aka Julie’s Happy Blog)

Happy Birthday Jules! 38th Birthday, 48th Surgery

5 COMMENTS

  1. To those who do not know Julie personally, you are so missing out. She is one AWESOME person. I was blessed to meet her in elementary school. Despite any pain or challenge she was going threw you could never tell. She always had a smile on her face, and had the best, and most contagous laugh. She always was worried about others and not herself. And dont ask her if she needs help because you will get a big “NO” Im good, but thanks. Watching her as a child go threw the things she did I didnt really understand how brave she was being, but always knew how strong she was. She is a HERO to many, and the best person you could ever have met. After all these years she is still so strong and very brave, and I love her lots. Julie I am very blessed to know you and have you as a friend. You go girl!!!! God has plans for you and has for along time. You will be walking by faith in no time.

    • Dearest Renee,
      Wow! You humble me with your words. It is those who knew me since childhood and have seen me finally open up – not as easy for me as it seems. If it can give hope or inspiration then it’s worth it! I often wondered what everyone thought as I went from surgery to surgery seemingly untouched. Your insight is spot on and faith is what has gotten me this far and family and friends all hand picked for this crazy life! It’s neat to look back and see how it’s molded us and know the stuff we can choose to carry as burdens or use as positive illustration. It’s more then wonderful to re-connect!! Be well and thank you for your kindness :) now and always!
      Love,
      Jules

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